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	<title>AIMS-2-TRIALS &#8211; Autism Research For Europe</title>
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	<description>AIMS-2-TRIALS - Autism Research For Europe</description>
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		<title>Longitudinal European Autism Project: Summary Of Key Achievements</title>
		<link>https://www.aims-2-trials.eu/2026/07/10/longitudinal-european-autism-project-summary-of-key-achievements/?utm_source=rss&#038;utm_medium=rss&#038;utm_campaign=longitudinal-european-autism-project-summary-of-key-achievements</link>
		
		<dc:creator><![CDATA[Scarlett]]></dc:creator>
		<pubDate>Fri, 10 Jul 2026 15:30:07 +0000</pubDate>
				<category><![CDATA[AIMS-2-TRIALS News]]></category>
		<guid isPermaLink="false">https://www.aims-2-trials.eu/?p=20209</guid>

					<description><![CDATA[<p>Collection of a unique dataset across Europe The Longitudinal European Autism Project (LEAP) is a pioneering European project that aimed to identify biological characteristics (biomarkers) that are common or distinct between autistic people and that could help predict an autistic person’s likely developmental trajectory or support needs. We collected comprehensive information from 430 autistic people [&#8230;]</p>
The post <a href="https://www.aims-2-trials.eu/2026/07/10/longitudinal-european-autism-project-summary-of-key-achievements/">Longitudinal European Autism Project: Summary Of Key Achievements</a> first appeared on <a href="https://www.aims-2-trials.eu">AIMS-2-TRIALS - Autism Research For Europe</a>.]]></description>
										<content:encoded><![CDATA[<p><strong><span class="TextRun SCXW211533497 BCX8" lang="EN-GB" xml:lang="EN-GB" data-contrast="auto"><span class="NormalTextRun SCXW211533497 BCX8">Collection of a unique dataset across Europe<br />
</span></span></strong>The Longitudinal European Autism Project (LEAP) is a pioneering European project that aimed to identify biological characteristics (biomarkers) that are common or distinct between autistic people and that could help predict an autistic person’s likely developmental trajectory or support needs. We collected comprehensive information from 430 autistic people and 300 non-autistic people or those with mild intellectual disability at six research sites across Europe. This included comprehensive information on clinical features (autistic features), co-occurring neurodevelopmental and mental health conditions (such as ADHD, anxiety and depression), behavioural and cognitive profiles (using computerised tasks and eye-tracking) brain development and function (MRI brain scans, EEG), immune markers, genomics and environmental information. Between 2014-2026 we followed children, adolescents and adults originally recruited between the age of 6-30 years) on three occasions.</p>
<p><span data-contrast="auto">Several aspects of the design were unique:</span><span data-ccp-props="{}"> </span></p>
<ul>
<li aria-setsize="-1" data-leveltext="-" data-font="Aptos" data-listid="2" data-list-defn-props="{&quot;335551671&quot;:14,&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Aptos&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;-&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}" data-aria-posinset="14" data-aria-level="1"><span data-contrast="auto">The study included autistic people with co-occurring conditions such as ADHD or intellectual disability who were previously often excluded from autism studies) </span><span data-ccp-props="{}"> </span></li>
<li aria-setsize="-1" data-leveltext="-" data-font="Aptos" data-listid="2" data-list-defn-props="{&quot;335551671&quot;:14,&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Aptos&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;-&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}" data-aria-posinset="14" data-aria-level="1"><span data-contrast="auto">The study aimed to more accurately represent autistic females by recruiting autistic females to form one third of the autistic sample. See our </span><a href="https://www.aims-2-trials.eu/wp-content/uploads/LEAP-Flyer-website.pdf"><span data-contrast="none">LEAP leaflet</span></a><span data-contrast="auto"> for an overview of the project.</span><span data-ccp-props="{}"> </span></li>
<li aria-setsize="-1" data-leveltext="-" data-font="Aptos" data-listid="2" data-list-defn-props="{&quot;335551671&quot;:14,&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Aptos&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;-&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}" data-aria-posinset="14" data-aria-level="1"><span data-contrast="auto">The study used the same core protocol in all participants (including appropriate adaptations for age and ability level).</span></li>
</ul>
<p><strong><span class="TextRun SCXW240077432 BCX8" lang="EN-GB" xml:lang="EN-GB" data-contrast="auto"><span class="NormalTextRun SCXW240077432 BCX8"><br />
Key scientific papers</span><span class="NormalTextRun SCXW240077432 BCX8"> and findings<br />
</span></span></strong>The large-scale data set of LEAP has allowed researchers to investigate previous reports of group differences between autistic and non-autistic people.  In a first step, we investigated group differences across all levels, including cognition, brain structure, function and tested some of the most influential theories of autism. This resulted in the replication of some findings, but also so-called null findings, which are equally important for furthering scientific understanding of autism. For example, we found average group differences in theory of mind, executive function and emotion processing (when tested behaviourally, but not in terms of underlying brain function). We replicated differences in brain structure with small effect sizes but did not find differences in EEG power bands (measure of specific brainwave frequency).</p>
<p><span data-contrast="auto">Overall, there was considerable overlap between autistic and non-autistic people in various cognitive and brain-related characteristics. We estimated that when statistical effects are moderate or even large, this translates to 48-70% of autistic people falling within the ‘typical range’, showing no difference or atypicality statistically.</span></p>
<p>These initial sets of findings prompted us to develop new methods and approaches to identify potential sub-groups among autistic people with specific cognitive or neurobiological characteristics.</p>
<p><span data-contrast="auto">Over 100 research papers, including the LEAP data collected as part of EU-AIMS and AIMS-2-TRIALS projects, have been published. Some examples of initial findings using data from the first and second assessment waves are included below, and other publications can be found on the </span><a href="https://www.aims-2-trials.eu/news/publications/"><span data-contrast="none">AIMS-2-TRIALS publication page here</span></a><span data-contrast="auto">.  </span><span data-ccp-props="{}"> </span></p>
<ul>
<li aria-setsize="-1" data-leveltext="" data-font="Symbol" data-listid="1" data-list-defn-props="{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}" data-aria-posinset="1" data-aria-level="1"><span data-contrast="auto">Multiple types of data were collected in LEAP to look at the relationship between different measures, and how these differ in autistic and non-autistic people. Researchers found that when they combined information from multiple types of data in a multi-modal model, such as brain function during rest and while completing various tasks as well as measures of brain anatomy, they found substantially higher average differences between the autistic and non-autistic groups than when only single measures were compared. Within the autism group, individual differences in the multifunctional model were associated with cognitive and social but not non-social and functioning characteristics of autism. This shows that combinations of measures are more informative that any single measure at understanding differences in autistic people. <a href="https://www.nature.com/articles/s44220-024-00349-4">More information can be found via this paper</a></span></li>
</ul>
<ul>
<li aria-setsize="-1" data-leveltext="" data-font="Symbol" data-listid="1" data-list-defn-props="{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}" data-aria-posinset="2" data-aria-level="1"><span data-contrast="none">The timing of the N170, a pattern of brain activity measured using EEG </span><span data-contrast="auto">(electroencephalography) </span><span data-contrast="none">and related to face processing, was identified as a potential ‘biomarker’ that may help to identify who will respond most to certain kinds of support strategy and prevent those unlikely to benefiting from starting with it in the first place. </span><span data-contrast="auto">This measure provided a helpful way to identify subgroups of autistic people who shared similar social outcomes two years later. </span><span data-contrast="auto"><a href="https://www.aims-2-trials.eu/2022/12/19/measuring-brain-activity-may-help-tailor-support-for-autistic-people/">See this news piece for further information</a></span></li>
</ul>
<ul>
<li aria-setsize="-1" data-leveltext="" data-font="Symbol" data-listid="1" data-list-defn-props="{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}" data-aria-posinset="3" data-aria-level="1"><span data-contrast="auto">Cortical thickness of the brains of autistic and non-autistic people was examined using structural MRI scans.  The brain cortex is one of many indicators of brain anatomy, measuring cortical thickness is one method used to map a person’s brain structure and understand how this may be related to behaviour. Individual differences among autistic people based on this measure were identified and were found to be related to genetic likelihood for autism and sensory subgroups. </span><br />
<span data-contrast="auto"><a href="https://psychiatryonline.org/doi/10.1176/appi.ajp.2021.20050630">More information can be found via this paper</a></span></li>
</ul>
<ul>
<li aria-setsize="-1" data-leveltext="" data-font="Symbol" data-listid="1" data-list-defn-props="{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}" data-aria-posinset="4" data-aria-level="1"><span data-contrast="auto">Differences in functional connectivity patterns in the brain between the cerebellum and other brain areas were identified, including increased connectivity of the cerebellum with sensory and motor networks. This finding could explain multisensory and visual motor differences in autism. <a href="https://www.sciencedirect.com/science/article/abs/pii/S2451902218303069">More information can be found via this paper</a></span></li>
</ul>
<ul>
<li aria-setsize="-1" data-leveltext="" data-font="Symbol" data-listid="1" data-list-defn-props="{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}" data-aria-posinset="5" data-aria-level="1"><span data-contrast="auto">Researchers investigated the influence of environmental and family conditions on mental health, with a particular focus on understanding internalising symptoms (such as anxiety and depression) and externalising symptoms (such as aggression and impulsive behaviours). This research included autistic people across a wide age range and across countries, using the LEAP and a South African cohort.  Participants with more autistic traits were found to experience more mental health challenges across countries. Furthermore, the “Family System” (family size, composition, maternal factors) consistently influenced mental health, but its specific impact varied. Across the LEAP cohort, the Family System had a protective effect against mental health symptoms; in South Africa, this relationship was reversed, with participants with larger families being more susceptible to experiencing mental health conditions, suggesting this may be impacted by the high/low-middle income setting. In both cases, autistic traits diminished these effects. These results reinforce the notion that context and autistic traits interact to influence mental health, and that the household support should be considered when providing support to autistic individuals, especially when considering regional differences in diagnosis and service availability. <a href="https://journals.sagepub.com/doi/10.1177/13623613231200297?url_ver=Z39.88-2003&amp;rfr_id=ori:rid:crossref.org&amp;rfr_dat=cr_pub%20%200pubmed">More information can be found via this paper </a></span></li>
</ul>
<ul>
<li aria-setsize="-1" data-leveltext="" data-font="Symbol" data-listid="1" data-list-defn-props="{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}" data-aria-posinset="6" data-aria-level="1"><span data-contrast="auto">Researchers investigated the wellbeing of autistic children and adults in the LEAP cohort. Although well-being was on average lower for in the autism than the non-autistic group, a notable proportion (36%–71% across quality-of-life domains) of autistic individuals reported good well-being. Reduced wellbeing was related to depression symptoms, across all ages. For children and adolescents, anxiety and social-communication difficulties were also related to quality of life. The study suggests that support and services to improve mental health, especially depression, may also improve broader wellbeing and quality of life for autistic people. More information can be found via this paper: </span><a href="https://journals.sagepub.com/doi/10.1177/1362361320959959"><span data-contrast="none">More information can be found via this paper</span></a></li>
</ul>
<ul>
<li aria-setsize="-1" data-leveltext="" data-font="Symbol" data-listid="1" data-list-defn-props="{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}" data-aria-posinset="7" data-aria-level="1"><span data-contrast="auto">Researchers identified a subgroup of autistic people who had difficulties with emotion recognition compared to the rest of the group. This was based on the combination of performance across three different tests. This subgroup had higher scores on measures of autistic characteristics, lower scores on measures of adaptive behaviour and showed brain functional differences. These findings suggest support in emotion recognition could be helpful for supporting social interaction in a subset of autistic individuals, if they wish to seek support. </span><a href="https://link.springer.com/article/10.1186/s13229-022-00520-7#citeas"><span data-contrast="none">More information can be found via this paper.</span></a></li>
</ul>
<p><span data-contrast="auto">For the latest updates on papers, including ones currently under review, see our </span><a href="https://www.aims-2-trials.eu/news/publications/"><span data-contrast="none">publications page</span></a><span data-contrast="auto">. </span><span data-ccp-props="{}"> </span></p>
<p><b><span data-contrast="auto">Community collaborations and priorities</span></b></p>
<p><span data-contrast="auto">LEAP brought together different experts (e.g., clinicians, neuroscientists, biologists) to provide the necessary expertise to carry out this study and interpret the outcomes. AIMS-2-TRIALS’ collaboration with autism community members on projects using LEAP data has been an important part of the project and ensures community perspectives are incorporated in the research process (see </span><a href="https://www.aims-2-trials.eu/about-aims-2-trials/team/autism-representatives/"><span data-contrast="none">A-Reps page</span></a><span data-contrast="auto"> for more details). This has also helped develop a template of how collaborative working with the community can be done in future work. An example of this work within LEAP is a research paper sharing the genetic findings from the study, which includes several community members as co-authors who were part of the data interpretation and write up of the paper. A pre-print of this paper can be found </span><a href="https://www.medrxiv.org/content/10.1101/2025.11.24.25340858v2.full"><span data-contrast="none">here</span></a><span data-contrast="auto">.</span></p>
<p><span data-contrast="auto">Driven by community engagement and policy work in AIMS-2-TRALS, there has been a</span><b><span data-contrast="auto"> </span></b><span data-contrast="auto">shift in focus of LEAP projects and papers toward sensory, mental health, developmental perspectives and further investigation of co-occurring epilepsy to reflect community priorities in these areas. This aligns with the priorities highlighted by the AIMS-2-TRIALS  A-Rep group and published work by our group and others (</span><a href="https://pubmed.ncbi.nlm.nih.gov/38311602/"><span data-contrast="none">Cage et al. 2024</span></a><span data-contrast="auto">, </span><a href="https://link.springer.com/article/10.1186/s13229-026-00706-3"><span data-contrast="none">Ikhsan, Holt et al 2026</span></a><span data-contrast="auto">).</span></p>
<p>Data analysis projects from LEAP have had an increased focus on mental health and the impact this has on quality of life of autistic people. To ensure community perspectives are incorporated in this work collaborations were set up on several mental health projects using LEAP data including researchers and autism community members. There has also been an increased focus on co-occurring ADHD in autistic people and the challenges associated with this condition, as a result of community prioritisation of this area of research. Lastly, new work building on the LEAP study, examining autistic burnout is being carried out in collaboration with autism community members.</p>
<p><span data-contrast="auto">This project has had greater focus on the variation within autism in our approaches and analysis techniques. This had included identifying subgroups of autistic people who differ in terms of biological characteristics such as genetics or brain structure or function and also differ in terms of behavioural characteristics. These groups likely differ in terms of the support they need and the how effective certain interventions might be. This provides steps towards a more personalised approach to autism both in terms of support and treatment approaches for those that want and need them. We are now in a position to trace developmental trajectories by combining the data from each volunteer across 3 time-points and over 8-12 years. This provides the critical basis to identify markers for the progression of specific clinical features, their combination, or changes in quality of life.</span><span data-ccp-props="{}"> </span></p>
<p><b><span data-contrast="auto">Wider impacts from the project</span></b></p>
<p><span data-contrast="auto">LEAP researchers have developed and made methodological advances in research techniques such as normative modelling, which provide new ways of looking at variation within groups and development over time. This could allow researchers to make predictions about individuals which is a vital step towards being able to provide personalised interventions and support. This technique creates a reference model of development (for example of brain structure) and qualifies how much each individual differs from that model, </span><span data-contrast="auto">or the statistical ‘norm’*.</span><span data-contrast="auto"> This method aims to better quantify statistically the variation within autism across development and therefore improve understanding of the diversity of autism. These techniques were not available at the beginning of the project and have required development to address the statistical questions required in this context. The statistical models and methodologies used are therefore an important resource for future work in this area.</span></p>
<p><span data-contrast="auto">Analysis techniques used in AIMS-2-TRIALS have given more consideration to the heterogeneity of autism, going beyond the historical focus on ‘case control’ differences (i.e., differences between autistic and non-autistic people, on average). This is important to help understand differences within groups of autistic people, and how these relate to diverse outcomes. This could, in the future, support the development of more personalised support for autistic people (including medical and non-medical approaches depending on a person’s preference and needs). These approaches include looking at subgroups or clusters within and across groups as well as normative modelling techniques which look at developmental trajectories. Modelling developmental trajectories can allow us to see and predict how people develop over time on different measures such as brain structure, performance on a particular task or clinical characteristics such as depression and anxiety or sensory sensitivity. This leads to better ways of mapping variation within autism as it shows the variation and helps identify any patterns within this that could in the future be useful for diagnosis, individualised support and interventions for those that want and need them.</span></p>
<p><span data-contrast="auto">Historically, autistic people with a co-occurring intellectual disability have been an under-researched group. LEAP includes unique data from a subgroup of autistic people with co-occurring mild to moderate intellectual disability which have been analysed and can be further utilised in the future to increase understanding about this group of autistic people. The data from LEAP can also be combined with other AIMS-2-TRIALS cohorts such as SynaG to increase statistical power and validate findings. SynaG included people with rare genetic conditions associated with autism and intellectual disability including Phelan McDermid syndrome and NRXN. </span></p>
<p><span data-contrast="auto">More about this project can be found here<a href="https://www.aims-2-trials.eu/our-research/biomarkers/rare-genetic-conditions/."> via this website page</a></span></p>
<p><span data-contrast="auto">Researchers showed that a particular feature of EEG (electroencephalography) data in called N170, a brain response that reflects face processing, was different in autistic people and could be a potential </span><a href="https://www.aims-2-trials.eu/our-research/biomarkers/"><span data-contrast="none">biomarker</span></a><span data-contrast="auto"> of autism. These finding suggests a difference in the brain’s processing of faces in autistic people. More details can be found </span><a href="https://www.aims-2-trials.eu/2022/12/19/measuring-brain-activity-may-help-tailor-support-for-autistic-people/"><span data-contrast="none">here.</span></a><span data-contrast="auto"> Following analysis and validation of the N170 biomarker using LEAP and data from other cohorts, AIMS-2-TRIALS embarked on a unique process to validate this marker with European Medicines Agency (EMA). This was the first work with a potential biomarker in the autism field to do this. See the </span><a href="https://www.aims-2-trials.eu/2021/05/22/update-favourable-feedback-from-european-medicines-agency-2/"><span data-contrast="none">news piece</span></a><span data-contrast="auto"> on this work for more details. Identification and further validation of biomarkers should allow for more effective research into autism, including interventions and support for core and co-occurring characteristics for those that seek them. </span></p>
<p><span data-contrast="auto">LEAP data has significant potential to inform new and innovative methods and scientific progress in the future, including for the research community beyond AIMS-2-TRIALS. This is made possible via sustainable data sharing on the ELIXIR platform. The AIMS-2-TRIALS data sharing process has been designed in collaboration with autism community members to ensure that data would be shared in an ethical manner and following recommendations from the community. Data is only shared for participants that explicitly gave their consent to share data beyond the research consortium. Applications to access data are reviewed by the data access committee, including scientists and community members to ensure future projects are of a high quality and meet AIMS-2-TRIALS </span><a href="https://www.aims-2-trials.eu/our-research/ethics/"><span data-contrast="none">consortium principles</span></a><span data-contrast="auto">.  This offers autism researchers beyond the project an opportunity to analyse data to address new research questions. This also opens up an opportunity for researchers combine different data types from the LEAP project, and with data from other projects (e.g. ABC-CT, InovAND, SFARI, POND) for the purposes of replication of findings. This provides greater validity of research findings.</span></p>
<p><span data-contrast="auto">See the data sharing FAQs and the ELIXIR platform for more information. </span></p>
<p><b><span data-contrast="auto">Want to find out more?</span></b></p>
<p><span data-contrast="auto">See AIMS-2-TRIALS YouTube videos for more details on some of these topics, including the LEAP ‘</span><a href="https://www.youtube.com/watch?v=K5_w-8Aa-f4"><span data-contrast="none">Meet our researchers’, </span></a><span data-contrast="auto">where our work on sensory, mental health, epilepsy and brain activity are discussed. The </span><a href="https://www.youtube.com/watch?v=AAx7DcYN81o"><span data-contrast="none">autistic burnout</span></a><span data-contrast="auto"> video explores our work with community members on this topic, and the </span><a href="https://www.youtube.com/watch?v=HM5q3DnwRcg"><span data-contrast="none">LEAP Epilepsy</span></a><span data-contrast="auto"> video explores co-occurring autism and epilepsy, and the important inclusion of this work within LEAP.</span></p>
<p>For further information on the LEAP project, see the<a href="https://www.aims-2-trials.eu/leap-front-page/"> LEAP page here</a> and the<a href="https://www.aims-2-trials.eu/wp-content/uploads/LEAP-Flyer-website.pdf"> LEAP flyer here.</a></p>
<p><em>*<span data-teams="true">this term is used in the context of statistical terminology not in reference to individual variation.</span></em></p>The post <a href="https://www.aims-2-trials.eu/2026/07/10/longitudinal-european-autism-project-summary-of-key-achievements/">Longitudinal European Autism Project: Summary Of Key Achievements</a> first appeared on <a href="https://www.aims-2-trials.eu">AIMS-2-TRIALS - Autism Research For Europe</a>.]]></content:encoded>
					
		
		
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		<title>AIMS-2-TRIALS A-Rep Dr Mary Doherty honoured with British Citizen Award</title>
		<link>https://www.aims-2-trials.eu/2026/07/03/aims-2-trials-a-rep-dr-mary-doherty-honoured-with-british-citizen-award/?utm_source=rss&#038;utm_medium=rss&#038;utm_campaign=aims-2-trials-a-rep-dr-mary-doherty-honoured-with-british-citizen-award</link>
		
		<dc:creator><![CDATA[Scarlett]]></dc:creator>
		<pubDate>Fri, 03 Jul 2026 15:46:38 +0000</pubDate>
				<category><![CDATA[AIMS-2-TRIALS News]]></category>
		<guid isPermaLink="false">https://www.aims-2-trials.eu/?p=20193</guid>

					<description><![CDATA[<p>We are delighted to congratulate AIMS-2-TRIALS Autism Representative (A-Rep) Dr Mary Doherty on being recognised with a British Citizen Award Medal of Honour for Services to Healthcare (BCAh). Dr Doherty, a consultant anaesthetist from Ireland who is autistic and has ADHD, is one of 28 individuals to receive this prestigious award at a ceremony at [&#8230;]</p>
The post <a href="https://www.aims-2-trials.eu/2026/07/03/aims-2-trials-a-rep-dr-mary-doherty-honoured-with-british-citizen-award/">AIMS-2-TRIALS A-Rep Dr Mary Doherty honoured with British Citizen Award</a> first appeared on <a href="https://www.aims-2-trials.eu">AIMS-2-TRIALS - Autism Research For Europe</a>.]]></description>
										<content:encoded><![CDATA[<p><strong>We are delighted to congratulate AIMS-2-TRIALS Autism Representative (A-Rep) Dr Mary Doherty on being recognised with a British Citizen Award Medal of Honour for Services to Healthcare (BCAh).</strong></p>
<p>Dr Doherty, a consultant anaesthetist from Ireland who is autistic and has ADHD, is one of 28 individuals to receive this prestigious award at a ceremony at the Palace of Westminster on 23 July 2026. The award recognises her outstanding work championing the inclusion of neurodivergent professionals in healthcare and improving healthcare for autistic people.</p>
<p>In 2019, Mary founded <a href="https://autisticdoctorsinternational.com/"><strong>Autistic Doctors International</strong></a>, which has grown into a global community of more than 1,500 autistic doctors, providing peer support, advocacy, research and education. She was also awarded a PhD, titled “Autistic doctors: leveraging insider perspectives to improve healthcare for autistic people”, <a href="https://researchportal.lsbu.ac.uk/en/publications/autistic-doctors-leveraging-insider-perspectives-to-improve-healt/">and can be read here.</a></p>
<p>As a valued member of the AIMS-2-TRIALS A-Rep group, Mary brings her lived experience and expertise to help shape autism research alongside autistic people and carers from across Europe.</p>
<p>Congratulations to Dr Mary Doherty on this well-deserved recognition and thank you for your continued contribution to AIMS-2-TRIALS and the wider autism community.</p>
<p style="text-align: center;">.<img loading="lazy" decoding="async" class="alignnone size-medium wp-image-20194" src="https://www.aims-2-trials.eu/wp-content/uploads/UCD-Headshot-350x500.jpg" alt="" width="350" height="500" /><em><br />
</em></p>The post <a href="https://www.aims-2-trials.eu/2026/07/03/aims-2-trials-a-rep-dr-mary-doherty-honoured-with-british-citizen-award/">AIMS-2-TRIALS A-Rep Dr Mary Doherty honoured with British Citizen Award</a> first appeared on <a href="https://www.aims-2-trials.eu">AIMS-2-TRIALS - Autism Research For Europe</a>.]]></content:encoded>
					
		
		
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		<title>AIMS-2-TRIALS Dataset Made Available Through Managed Access Following Community Collaboration</title>
		<link>https://www.aims-2-trials.eu/2026/06/22/aims-2-trials-dataset-made-available-through-managed-access-following-community-collaboration/?utm_source=rss&#038;utm_medium=rss&#038;utm_campaign=aims-2-trials-dataset-made-available-through-managed-access-following-community-collaboration</link>
		
		<dc:creator><![CDATA[Scarlett]]></dc:creator>
		<pubDate>Mon, 22 Jun 2026 12:04:09 +0000</pubDate>
				<category><![CDATA[AIMS-2-TRIALS News]]></category>
		<guid isPermaLink="false">https://www.aims-2-trials.eu/?p=20101</guid>

					<description><![CDATA[<p>AIMS-2-TRIALS has released the first dataset to the autism research community, marking a significant milestone for the project. This follows a collaborative effort between AIMS-2-TRIALS researchers and autism community members with the data sharing platform ELIXIR to develop data sharing plans, procedures and documentation to ensure ethical and data security due diligence. Researchers external to the AIMS-2-TRIALS consortium who wish to access the data may submit requests [&#8230;]</p>
The post <a href="https://www.aims-2-trials.eu/2026/06/22/aims-2-trials-dataset-made-available-through-managed-access-following-community-collaboration/">AIMS-2-TRIALS Dataset Made Available Through Managed Access Following Community Collaboration</a> first appeared on <a href="https://www.aims-2-trials.eu">AIMS-2-TRIALS - Autism Research For Europe</a>.]]></description>
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<p><span class="TextRun SCXW267526383 BCX8" lang="EN-GB" xml:lang="EN-GB" data-contrast="auto"><span class="NormalTextRun SCXW267526383 BCX8">AIMS-2-TRIALS has released the first dataset to the autism research community, marking a significant milestone for the project. </span><span class="NormalTextRun SCXW267526383 BCX8">This follows </span><span class="NormalTextRun SCXW267526383 BCX8">a collaborative effort between AIMS-2-TRIALS researchers</span><span class="NormalTextRun SCXW267526383 BCX8"> and</span><span class="NormalTextRun SCXW267526383 BCX8"> autism community members </span><span class="NormalTextRun SCXW267526383 BCX8">with the data sharing platform ELIXIR to </span><span class="NormalTextRun SCXW267526383 BCX8">develop </span><span class="NormalTextRun SCXW267526383 BCX8">data sharing plans</span><span class="NormalTextRun SCXW267526383 BCX8">, </span><span class="NormalTextRun SCXW267526383 BCX8">procedures</span><span class="NormalTextRun SCXW267526383 BCX8"> and </span><span class="NormalTextRun SCXW267526383 BCX8">documentation </span><span class="NormalTextRun SCXW267526383 BCX8">to ensure ethical and </span><span class="NormalTextRun SCXW267526383 BCX8">data security due </span><span class="NormalTextRun SCXW267526383 BCX8">diligence</span><span class="NormalTextRun SCXW267526383 BCX8">. </span><span class="NormalTextRun SCXW267526383 BCX8">Researchers external to the AIMS-2-TRIALS consortium who wish to access the data may </span><span class="NormalTextRun SCXW267526383 BCX8">submit</span><span class="NormalTextRun SCXW267526383 BCX8"> requests for consideration by the project review board</span><span class="NormalTextRun SCXW267526383 BCX8">.</span></span><span class="LineBreakBlob BlobObject DragDrop SCXW267526383 BCX8"><br class="SCXW267526383 BCX8" /></span><span class="LineBreakBlob BlobObject DragDrop SCXW267526383 BCX8"><br class="SCXW267526383 BCX8" /></span><span class="TextRun SCXW267526383 BCX8" lang="EN-GB" xml:lang="EN-GB" data-contrast="auto"><span class="NormalTextRun SCXW267526383 BCX8">This </span><span class="NormalTextRun SCXW267526383 BCX8">focus on collaborative </span><span class="NormalTextRun SCXW267526383 BCX8">development </span><span class="NormalTextRun SCXW267526383 BCX8">of data sharing plans</span><span class="NormalTextRun SCXW267526383 BCX8"> with </span><span class="NormalTextRun SCXW267526383 BCX8">the</span><span class="NormalTextRun SCXW267526383 BCX8"> community has not only </span><span class="NormalTextRun SCXW267526383 BCX8">led to practical solutions for data sharing </span><span class="NormalTextRun SCXW267526383 BCX8">but also a broader consideration</span><span class="NormalTextRun SCXW267526383 BCX8"> and discussion on community priorities for </span><span class="NormalTextRun SCXW267526383 BCX8">ethical data sharing.</span></span></p>
<p><span data-contrast="none">Dr Beth Oakley, Lecturer in Neurodevelopmental sciences and AIMS-2-TRIALS Scientific co-ordinator, said: </span><span data-ccp-props="{}"> </span></p>
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<blockquote><p><i><span data-contrast="none">‘It has been a privilege to learn from, and work with, AIMS-2-TRIALS A-Reps colleagues in launching AIMS-2-TRIALS data via ELIXIR Luxembourg. Data sharing, particularly in autism research, is an incredibly sensitive area. It has been of utmost importance to design a rigorous data access process that prioritises community concerns and preferences and is delivered to the highest ethical standards. This would not have been possible without community input.’</span></i></p></blockquote>
<p><strong><span class="TextRun SCXW43235438 BCX8" lang="EN-GB" xml:lang="EN-GB" data-contrast="auto"><span class="NormalTextRun SCXW43235438 BCX8">What data does this include?</span></span></strong></p>
<p>This includes data from the first and second timepoints of the AIMS Longitudinal European Autism Project (LEAP). LEAP includes data from autistic and non-autistic children/young people and adults (6-30 years of age at the first timepoint) collected over approximately 4 years between 2014 and 2017. The data includes pre-processed or summary data from MRI, eye tracking, EEG, questionnaire data, coded interview data, cognitive task, and genetics data collected from research sites in the UK, the Netherlands and Germany.</p>
<p><span data-contrast="auto">More details on this project can be found on</span><a href="https://www.aims-2-trials.eu/leap-front-page/"><span data-contrast="none"> our website</span></a><span data-contrast="auto"> and in our </span><span aria-label="Rich text content control"><span data-contrast="auto">​</span><span data-contrast="auto">​</span></span><a href="https://www.aims-2-trials.eu/wp-content/uploads/LEAP-Flyer-AIMS-2-TRIALS.pdf"><span data-contrast="auto">LEAP leaflet.</span><span data-ccp-props="{}"> </span></a></p>
<p><strong><span class="TextRun SCXW223631693 BCX8" lang="EN-GB" xml:lang="EN-GB" data-contrast="auto"><span class="NormalTextRun SCXW223631693 BCX8">Where is the data being hosted?</span></span></strong></p>
<p><span data-contrast="auto">The AIMS-2-TRIALS external database is hosted on a platform called </span><a href="https://datacatalogue.elixir-luxembourg.org/e/project/ELU-1-725846-1"><span data-contrast="none">ELIXIR</span></a><span data-contrast="auto">. ELIXIR’s own goal is to make life science data easier to find, share, put together, and analyse.</span><span data-contrast="none"> </span><span data-contrast="auto">ELIXIR (and its Luxembourg node, specifically) was selected as the best fit for hosting the AIMS-2-TRIALS external database, as it is an existing GDPR compliant European infrastructure for long-term sustainability of life sciences data.</span><span data-ccp-props="{}"> </span></p>
<p><b><span data-contrast="auto">How can researchers apply for access to the data?</span></b></p>
<p><span data-contrast="auto">Researchers can apply for access to the data via ELIXIR’s platform by filling out a project proposal form including details of the requested measures, importance of the proposed project, planned statistics and data management plan and how the proposed research fits with the consortium’s ethical principles. Details of the application process can be found on the </span><a href="https://datacatalogue.elixir-luxembourg.org/e/project/ELU-1-725846-1"><span data-contrast="none">ELIXIR website</span></a><span data-contrast="auto">.</span></p>
<p><b><span data-contrast="auto">How have we considered the ethics of data sharing and involved community perspectives?</span></b></p>
<p>It is vital that data sharing is carried out with due consideration of the ethics and privacy of research participants, as well as considering the implications for the wider autism community.  Steps have and will be taken to ensure these critical issues are addressed. This includes autism community consultation, development of data access policies and consortium principles, and a review committee with both scientific and community representation.</p>
<p><span data-contrast="auto">AIMS-2-TRIALS </span><a href="https://aims-2-trials.eu/about-aims-2-trials/team/autism-representatives"><span data-contrast="none">autistic representatives</span></a><span data-contrast="auto"> (A-Reps) have been involved in the planning process through a dedicated data sharing working group, including advising on key ethical considerations around data sharing, reviewing and editing our data sharing policies/procedures. A-Reps are a group of autistic people and parents/carers of autistic people who have worked with AIMS-2-TRIALS researchers across the course of the grant to consult and input into the project. Working with autism community members to develop our data sharing plans has been key to understanding and addressing issues of importance to the community surrounding these endeavours (e.g. unethical or unintended use, data security, biased data interpretation). <a href="https://www.aims-2-trials.eu/our-research/datasharing/">More details on this process can be found in our FAQs.</a></span></p>
<p><span class="TextRun SCXW49493835 BCX8" lang="EN-GB" xml:lang="EN-GB" data-contrast="auto"><span class="NormalTextRun SCXW49493835 BCX8">Our A-Reps shared their experiences throughout this process:</span></span></p>
<blockquote><p><i><span data-contrast="none">‘Having A-Reps input on the data sharing plans and procedures via a dedicated data sharing working group has been essential to help ensure that ethical safeguards are implemented to protect autistic participant&#8217;s study data.’</span></i><span data-ccp-props="{&quot;335557856&quot;:16777215,&quot;335559739&quot;:120}"> </span></p></blockquote>
<p><span data-contrast="none">Sarah Douglas, AIMS-2-TRIALS A-Rep</span><span data-ccp-props="{&quot;335557856&quot;:16777215,&quot;335559739&quot;:120}"> </span></p>
<blockquote><p><i><span data-contrast="none">‘Since the beginning of the project, the involvement of the A-reps has played an important role in shaping the direction of the work. This collaboration has helped ensure that the data sharing approach is practical, relevant, and built around the real needs of the autism community.’</span></i><span data-ccp-props="{&quot;335557856&quot;:16777215,&quot;335559739&quot;:120,&quot;335559746&quot;:50}"> </span></p></blockquote>
<p><b><span data-contrast="auto">How proposals will be reviewed?</span></b></p>
<p>For each external project proposal request that AIMS-2-TRIALS receives, the LEAP Project Review Committee will review to decide if the data can be shared. The review committee for project proposals includes A-Rep members and researchers from the AIMS-2-TRIALS consortium. Review by the committee will include a check that each project proposal is in line with the research themes that participants originally consented to. Reviewers will also consider the content of the proposal to ensure it meets the consortium’s ethical principles (Beneficence, Inclusion/Engagement, Culture/Language, Minimising Risk), as well as ensuring the scientific validity of projects.</p>
<p><b><span data-contrast="auto">What safeguards will be in place when researchers access the data?</span></b></p>
<p><span data-contrast="auto">Researchers applying for access to AIMS-2-TRIALS data will need to submit proof of ethics approvals (and/or relevant codes of conduct), a data management plan for their project proposal and consider the ethical implications of their project. Researchers who wish to access AIMS-2-TRIALS data will also need to confirm that they have read, understood, and acknowledged our data access policy/procedure.</span></p>
<p><span data-contrast="auto">AIMS-2-TRIALS data will only be shared in the manner participants have agreed to, including the sharing of data beyond the AIMS-2-TRIALS consortium. If participants wish to change their data sharing preferences, they are free to do so at any </span><span aria-label="Rich text content control"><span data-contrast="auto">​</span><span data-contrast="auto">​</span></span><span aria-label="Rich text content control"><span data-contrast="auto">​</span><span data-contrast="auto">​</span></span><span data-contrast="auto">time.  To protect participant privacy, secure identification codes were assigned to each individual&#8217;s data. All study assessments use these codes, rather than names or any other personal identifiers. The ELIXIR platform also uses two factor authentication for those accessing the data, as an additional layer of security.</span></p>
<p><strong>Further information:</strong></p>
<p><a id="menurmhd" class="fui-Link ___1q1shib f2hkw1w f3rmtva f1ewtqcl fyind8e f1k6fduh f1w7gpdv fk6fouc fjoy568 figsok6 f1s184ao f1mk8lai fnbmjn9 f1o700av f13mvf36 f1cmlufx f9n3di6 f1ids18y f1tx3yz7 f1deo86v f1eh06m1 f1iescvh fhgqx19 f1olyrje f1p93eir f1nev41a f1h8hb77 f1lqvz6u f10aw75t fsle3fq f17ae5zn" title="https://www.aims-2-trials.eu/our-research/datasharing/" href="https://www.aims-2-trials.eu/our-research/datasharing/" target="_blank" rel="noreferrer noopener" aria-label="Link Protected: Data Sharing">For more information on general data access, please see this website page: Data Sharing</a></p>
<p><a id="menurmhf" class="fui-Link ___1q1shib f2hkw1w f3rmtva f1ewtqcl fyind8e f1k6fduh f1w7gpdv fk6fouc fjoy568 figsok6 f1s184ao f1mk8lai fnbmjn9 f1o700av f13mvf36 f1cmlufx f9n3di6 f1ids18y f1tx3yz7 f1deo86v f1eh06m1 f1iescvh fhgqx19 f1olyrje f1p93eir f1nev41a f1h8hb77 f1lqvz6u f10aw75t fsle3fq f17ae5zn" title="https://www.aims-2-trials.eu/our-research/data-access-researcher/" href="https://www.aims-2-trials.eu/our-research/data-access-researcher/" target="_blank" rel="noreferrer noopener" aria-label="Link Protected: Data Access: Researcher">For more information on data access if you are a researcher, please see this website page: Data Access for Researcher</a></p>
<p><a id="menurmhf" class="fui-Link ___1q1shib f2hkw1w f3rmtva f1ewtqcl fyind8e f1k6fduh f1w7gpdv fk6fouc fjoy568 figsok6 f1s184ao f1mk8lai fnbmjn9 f1o700av f13mvf36 f1cmlufx f9n3di6 f1ids18y f1tx3yz7 f1deo86v f1eh06m1 f1iescvh fhgqx19 f1olyrje f1p93eir f1nev41a f1h8hb77 f1lqvz6u f10aw75t fsle3fq f17ae5zn" title="https://www.aims-2-trials.eu/our-research/data-access-researcher/" href="https://www.aims-2-trials.eu/our-research/data-access-researcher/" target="_blank" rel="noreferrer noopener" aria-label="Link Protected: Data Access: Researcher">For more information on data access if you were a participant, please see this website page: D</a><a id="menurmhh" class="fui-Link ___1q1shib f2hkw1w f3rmtva f1ewtqcl fyind8e f1k6fduh f1w7gpdv fk6fouc fjoy568 figsok6 f1s184ao f1mk8lai fnbmjn9 f1o700av f13mvf36 f1cmlufx f9n3di6 f1ids18y f1tx3yz7 f1deo86v f1eh06m1 f1iescvh fhgqx19 f1olyrje f1p93eir f1nev41a f1h8hb77 f1lqvz6u f10aw75t fsle3fq f17ae5zn" title="https://www.aims-2-trials.eu/our-research/data-sharing-data-access-participant/" href="https://www.aims-2-trials.eu/our-research/data-sharing-data-access-participant/" target="_blank" rel="noreferrer noopener" aria-label="Link Protected: Data Access: Participant">ata Access for Participant</a></p>
<p><a href="https://www.aims-2-trials.eu/leap-front-page/">For more information on the LEAP project, please see this website page: LEAP project page</a></p>
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<p><em>Image: Network People by ktsimage from Getty Images via Canva.com</em></p>
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</div>The post <a href="https://www.aims-2-trials.eu/2026/06/22/aims-2-trials-dataset-made-available-through-managed-access-following-community-collaboration/">AIMS-2-TRIALS Dataset Made Available Through Managed Access Following Community Collaboration</a> first appeared on <a href="https://www.aims-2-trials.eu">AIMS-2-TRIALS - Autism Research For Europe</a>.]]></content:encoded>
					
		
		
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		<title>Autistic people’s priorities for change across Europe</title>
		<link>https://www.aims-2-trials.eu/2026/03/18/autistic-peoples-priorities-for-change-across-europe/?utm_source=rss&#038;utm_medium=rss&#038;utm_campaign=autistic-peoples-priorities-for-change-across-europe</link>
		
		<dc:creator><![CDATA[Scarlett]]></dc:creator>
		<pubDate>Wed, 18 Mar 2026 17:57:13 +0000</pubDate>
				<category><![CDATA[AIMS-2-TRIALS News]]></category>
		<guid isPermaLink="false">https://www.aims-2-trials.eu/?p=19991</guid>

					<description><![CDATA[<p>Researchers from the University of Cambridge led a study investigating autistic people’s priorities for change in collaboration with colleagues in the AIMS-2-TRIALS consortium including autism community members and autism charity representatives across Europe. Although globally autism diagnosis rates are on the rise and autism awareness is improving, autistic people and carers still face significant challenges [&#8230;]</p>
The post <a href="https://www.aims-2-trials.eu/2026/03/18/autistic-peoples-priorities-for-change-across-europe/">Autistic people’s priorities for change across Europe</a> first appeared on <a href="https://www.aims-2-trials.eu">AIMS-2-TRIALS - Autism Research For Europe</a>.]]></description>
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<p><strong>Researchers from the University of Cambridge led a study investigating autistic people’s priorities for change in collaboration with colleagues in the AIMS-2-TRIALS consortium including autism community members and autism charity representatives across Europe.</strong></p>
<p>Although globally autism diagnosis rates are on the rise and autism awareness is improving, autistic people and carers still face significant challenges in receiving the necessary services and going through their day-to-day life. It is vital that policies on autism strive to address these issues and meet the needs of the autism community more effectively.</p>
<p>The 10 Points for Change survey was distributed in multiple European languages and collected data from 1,709 autistic people, parents and careers of autistic people and members of autism-related organisations.</p>
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<p>In this study published in <i><u><a title="Original URL: https://link.springer.com/article/10.1186/s13229-026-00706-3. Click or tap if you trust this link." href="https://link.springer.com/article/10.1186/s13229-026-00706-3" data-auth="NotApplicable" data-linkindex="1">Molecular Autism</a></u></i>, the team identified the 10 most important areas for change for autistic people across Europe. Autistic people ranked education, public awareness and understanding of autism, employment, discrimination, mental healthcare, bullying/ abuse, government funding for autism-specific services, social inclusion, diagnostic services and financial hardship as the highest priority areas for change. Parents and members of autism-related organisations agreed with many of the priority areas for change but ranked support for daily living, early intervention and post-diagnostic support within the top 10 priorities.</p>
<p>This work highlights the need for change to improve the lives of autistic people across Europe including improvements to key services like education and mental healthcare as well as societal changes such as public understanding of autism, social inclusion and bullying. Policies on autism at both national and European Union (EU) levels should therefore focus on these areas, as policy action is an integral mechanism for protecting the rights and improving the wellbeing of autistic people.</p>
<p><a href="https://www.aims-2-trials.eu/our-research/autism-policy-across-europe/"><img loading="lazy" decoding="async" class="alignnone wp-image-19990" src="https://www.aims-2-trials.eu/wp-content/uploads/Screenshot-2026-03-18-174718-500x378.png" alt="" width="378" height="286" /></a></p>
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<p>Image: A 2-page summary of these findings can be found here:<a href="https://www.aims-2-trials.eu/our-research/autism-policy-across-europe/">www.aims-2-trials.eu/our-research/autism-policy-across-europe/</a></p>
<p>The paper for this study can be found here: <a href="https://link.springer.com/article/10.1186/s13229-026-00706-3">https://link.springer.com/article/10.1186/s13229-026-00706-3 </a></p>The post <a href="https://www.aims-2-trials.eu/2026/03/18/autistic-peoples-priorities-for-change-across-europe/">Autistic people’s priorities for change across Europe</a> first appeared on <a href="https://www.aims-2-trials.eu">AIMS-2-TRIALS - Autism Research For Europe</a>.]]></content:encoded>
					
		
		
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		<title>Roche and AIMS-2-TRIALS Receives EURORDIS Black Pearl Award 2026</title>
		<link>https://www.aims-2-trials.eu/2026/03/10/roche-and-aims-2-trials-receives-eurordis-black-pearl-award-2026/?utm_source=rss&#038;utm_medium=rss&#038;utm_campaign=roche-and-aims-2-trials-receives-eurordis-black-pearl-award-2026</link>
		
		<dc:creator><![CDATA[Scarlett]]></dc:creator>
		<pubDate>Tue, 10 Mar 2026 15:24:54 +0000</pubDate>
				<category><![CDATA[AIMS-2-TRIALS News]]></category>
		<guid isPermaLink="false">https://www.aims-2-trials.eu/?p=19922</guid>

					<description><![CDATA[<p>EURORDIS awarded Roche and King’s College London the 2026 Company Award for Patient Engagement*, in recognition for their work with people with rare genetic conditions and the autistic community in the AIMS-2-TRIALS consortium. On 24 February 2026, at the EURORDIS Black Pearl Awards ceremony in Brussels, the Company Award for Patient Engagement was presented to Roche and [&#8230;]</p>
The post <a href="https://www.aims-2-trials.eu/2026/03/10/roche-and-aims-2-trials-receives-eurordis-black-pearl-award-2026/">Roche and AIMS-2-TRIALS Receives EURORDIS Black Pearl Award 2026</a> first appeared on <a href="https://www.aims-2-trials.eu">AIMS-2-TRIALS - Autism Research For Europe</a>.]]></description>
										<content:encoded><![CDATA[<p><strong>EURORDIS awarded Roche and King’s College London the 2026 Company Award for Patient Engagement*, in recognition for their work with people with rare genetic conditions and the autistic community in the AIMS-2-TRIALS consortium. </strong></p>
<p>On 24 February 2026, at the EURORDIS Black Pearl Awards ceremony in Brussels, the Company Award for Patient Engagement was presented to Roche and King’s College London (KCL) in recognition of their leadership of the AIMS-2-TRIALS project. The award was granted in recognition of the commitment of AIMS-2-TRIALS leaders to involving autistic people and people with rare genetic conditions, as equal partners in this initiative.</p>
<p>Harald Neerland, Autism Europe President, presented the award to Professor Emily Jones from King’s College London (KCL) and Birkbeck, University of London. Other representatives from KCL and Autism-Europe who attended the ceremony included Dr Bethany Oakley and Professor Tony Charman (KCL), and Aurélie Baranger (Autism-Europe).</p>
<p><img loading="lazy" decoding="async" class="size-medium wp-image-19971 aligncenter" src="https://www.aims-2-trials.eu/wp-content/uploads/EURORDIS_-237_cropped-455x500.jpg" alt="" width="455" height="500" /></p>
<p style="text-align: center;"><em>Caption: Professor Emily Jones from King’s College London (KCL) and Birkbeck, University of London (right), receiving the award and Harald Neerland of Autism Europe (left), presenting the award.</em></p>
<p>&nbsp;</p>
<p>Based on the nomination criteria, the award recognises organisations that demonstrate a long-term, constructive commitment to meaningful collaboration with participants across the full medicine development lifecycle. Awardees demonstrate sustained engagement with people with lived experience in key research and development decisions, supported by strong internal awareness, capability, and planning. The criteria also consider evidence of real impact, such as the integration of participant-informed outcomes, experiences, and priorities into decision-making.</p>
<p><strong>EURORDIS commented:</strong></p>
<blockquote><p><em>“Not only is the project contributing to improving the health outcomes of underserved autistic communities, it is also exploring rare genetic conditions associated with autism, including Phelan-McDermid syndrome, Fragile X and SHANK-related disorders. The direct involvement from people living with autism and rare neurodevelopmental diseases across the entire project has led to a better understanding of shared biological pathways and to an improved infrastructure for clinical trials across Europe, benefiting communities previously underrepresented in research.</em></p>
<p>&nbsp;</p>
<p><em>Embedded in genuine trust and collaboration, AIMS-2-TRIALS stands out as a best practice example where the input of participants with lived experience of autism has significantly shifted perspectives in conducting research, sharing data or developing meaningful outcome measures. EURORDIS commends the project leads for ensuring that the needs and priorities of autistic people, including those living with rare genetic conditions associated with autism, are appropriately represented in shaping the solutions that can improve their lives.”<br />
</em></p></blockquote>
<p><strong><br />
Bethany Oakley from King’s College London, who attended the ceremony, said:</strong></p>
<blockquote><p><em>“A key highlight at this awards event was that it showcased the impact and momentum that can be built when many communities come together in support of a common goal. Diverse rare genetic conditions communities were represented, all agreeing on priorities such as the need for earlier and more efficient diagnosis, and post-diagnostic information and support, better targeted treatment options to be available to serve individual needs, and wider public acceptance”.</em></p></blockquote>
<p>This achievement marks an important moment for the consortium as it enters the final year of the project. Congratulations to everyone involved in AIMS-2-TRIALS whose dedication has helped advance and improve meaningful participant engagement.</p>
<p><em><strong>*The AIMS-2-TRIALS Communications Team acknowledge that preferred language in this context would be community engagement or participant engagement. We are unable to alter or change the name of this award.</strong><br />
</em></p>The post <a href="https://www.aims-2-trials.eu/2026/03/10/roche-and-aims-2-trials-receives-eurordis-black-pearl-award-2026/">Roche and AIMS-2-TRIALS Receives EURORDIS Black Pearl Award 2026</a> first appeared on <a href="https://www.aims-2-trials.eu">AIMS-2-TRIALS - Autism Research For Europe</a>.]]></content:encoded>
					
		
		
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		<title>Towards a common approach for autism in Europe – European Parliamentary Event</title>
		<link>https://www.aims-2-trials.eu/2025/05/21/towards-a-common-approach-for-autism-in-europe-european-parliamentary-event/?utm_source=rss&#038;utm_medium=rss&#038;utm_campaign=towards-a-common-approach-for-autism-in-europe-european-parliamentary-event</link>
		
		<dc:creator><![CDATA[Scarlett]]></dc:creator>
		<pubDate>Wed, 21 May 2025 15:25:41 +0000</pubDate>
				<category><![CDATA[AIMS-2-TRIALS News]]></category>
		<guid isPermaLink="false">https://www.aims-2-trials.eu/?p=19630</guid>

					<description><![CDATA[<p>On 23rd April 2025 researchers from the AIMS-2-TRIALS Consortium presented their research findings and recommendations at the European Parliament in Brussels. The event ‘Towards a Common Approach for Autism in Europe’ was organised by Autism Europe in partnership with AIMS-2-TRIALS researchers. Autism-Europe hosted the event in collaboration with the Disability Intergroup (an informal group of Members [&#8230;]</p>
The post <a href="https://www.aims-2-trials.eu/2025/05/21/towards-a-common-approach-for-autism-in-europe-european-parliamentary-event/">Towards a common approach for autism in Europe – European Parliamentary Event</a> first appeared on <a href="https://www.aims-2-trials.eu">AIMS-2-TRIALS - Autism Research For Europe</a>.]]></description>
										<content:encoded><![CDATA[<p>On 23<sup>rd</sup> April 2025 researchers from the AIMS-2-TRIALS Consortium presented their research findings and recommendations at the European Parliament in Brussels.</p>
<p>The event ‘<em>Towards a Common Approach for Autism in Europe’ </em>was organised by Autism Europe in partnership with AIMS-2-TRIALS researchers. Autism-Europe hosted the event in collaboration with the Disability Intergroup (an informal group of Members of the European Parliament). The aim was to promote discussions among key stakeholders on the essential steps for advancing autism policy research and services. This includes improving the quality of life for autistic individuals and advocating for more equitable access to autism services and resources throughout the European Union (EU).</p>
<p><img loading="lazy" decoding="async" class=" wp-image-19628 alignleft" src="https://www.aims-2-trials.eu/wp-content/uploads/PXL_20250423_120845285.MP_-375x500.jpg" alt="" width="352" height="469" /></p>
<p>Researchers from the AIMS-2-TRIALS consortium, the world’s largest research project on autism, including the University of Cambridge, King’s College London, Birkbeck University of London, Hospital Universitario Gregorio Marañón in Madrid, and an autism community representative (A-Rep), shared key findings and learnings from the project and the implications this has for required policy changes and next steps. A-Reps are a group of autistic people and parents/ carers of autistic people that are part of the AIMS-2-TRIALS consortium, working with researchers to provide community perspectives and input at different stages of the research process. More information on this group can be found elsewhere on our <a href="https://www.aims-2-trials.eu/about-aims-2-trials/team/autism-representatives/">website.</a></p>
<p>Event attendees included Members of the European Parliament (MEPs), representatives from autism organisations, autism community members and researchers also heard from MEPs from the European Parliament Disability Intergroup. The focus was on the required action that is needed for autistic people across Europe &#8211; to address and respect the rights of autistic people and to improve service access and experiences for autistic people. The event resulted in commitments from MEPs to call for an EU-wide autism strategy and highlighted new research. The event illustrated the need for a ‘common approach’ to autism at the EU level in line with a 2024 mission letter from the president of the EU commission.</p>
<p>Research led by the University of Cambridge, and presented by Dr Siti Nurnadhirah Binte Mohd Ikhsan, showed that autistic people across Europe experience inconsistent access to service, long waiting times and barriers to access. In terms of priorities for change, autistic people and parents of autistic people in our Europe-wide survey prioritised education, employment, public awareness and understanding of autism, public funding for autism related services, and mental healthcare.</p>
<p>Professor Eva Loth, from King’s College London, outlined three key achievements from AIMS-2-TRIALS. Firstly, creation of the world largest Research Platform of linked longitudinal multi-disciplinary studies from infancy to adulthood, using cutting-edge neurotechnologies, and development of new analytic tools. Secondly, establishing a Europe-wide Clinical Trials Network (including a range of rare genetic conditions linked to autism), which will enable, for example, more efficient trials of treatments of epilepsy, rare conditions associated with autism and mental health difficulties. Thirdly and most importantly, creation of a truly collaborative, inter-disciplinary research community, that includes autistic people with lived experience. This has proven to be the key to addressing needs and priorities from autistic communities and shifting from deficit frameworks to neurodiversity-affirmative research. She also highlighted that while the EU-funding for AIMS-2-TRIALS is unprecedented, it must not remain a single large-scale investment as research funding for autism and neurodevelopmental conditions is still several magnitudes smaller than that for other mental health or medical conditions.</p>
<p>Professor Celso Arango, from Hospital Universitario Gregorio Marañón in Madrid, shared results from the value of treatment study on care pathways for autism and co-occurring epilepsy. Strikingly, this study found that 40-50% of participants waited around 2 years for an autism diagnosis in the UK, Spain and Italy. Their research also highlighted a lack of recognition of the common co-occurrence of epilepsy with autism and the need to screen for this to improve health outcomes for autistic people.</p>
<p>Mr Pierre Violland, AIMS-2-TRIALS A-Rep and Professional Peer Practitioner, discussed the diversity of autism and the need for a thoughtful and inclusive approach to better understand diversity and meet the needs of autistic people. He highlighted the need for more awareness about the co-occurrence of epilepsy with autism and recommended that actions were needed to reduce delays in diagnosis, increase support for families, and reduce the economic inequalities in accessing diagnoses and other necessary support or services.</p>
<p>Professor Emily Jones, from Birkbeck University of London, spoke on the need to focus future research on underrepresented groups, including those with high support needs and co-occurring mental and physical health conditions. She called for more research in early intervention to better understand how to support autistic people. She also highlighted the need for further focus on sensory differences and improvements to mental health support as areas of priority for treatment for autistic people.</p>
<p>The event attendees were welcomed and heard from MEPs from the European Parliament Disability Intergroup Other presenters included Harald Neerland, the President of Autism-Europe; Adam Harris from AsIAm (Ireland’s autism charity), who called for a clear and dedicated autism strategy at the EU level; and Inmaculada Placencia Porrero, Senior Expert in Disability and Inclusion at the European Commission and member of the UN CRPD Committee. The event was concluded with a Q&amp;A and panel discussion including members of the audience.</p>
<p>If you would like more information about this event or the research findings presented, you can find details at the links below:</p>
<ul>
<li>The full program of the event can be seen <a href="https://www.autismeurope.org/wp-content/uploads/2025/04/Programme_Intergroup_Conference_23-April-25.pdf">here.</a></li>
<li>Watch the recording here: <a href="https://youtu.be/5k0UAzaYyQQ">https://youtu.be/5k0UAzaYyQQ</a></li>
<li>Further information on the event can be found here on the <a href="https://www.autismeurope.org/blog/2025/04/28/high-level-conference-on-autism-calls-for-a-new-strategy-and-reveals-research-results/">Autism Europe website here</a></li>
<li>Summary reports of the mentioned research projects can be seen on the AIMS-2-TRIALS <a href="https://www.aims-2-trials.eu/our-research/autism-policy-across-europe/">Autism Policies page here</a></li>
</ul>The post <a href="https://www.aims-2-trials.eu/2025/05/21/towards-a-common-approach-for-autism-in-europe-european-parliamentary-event/">Towards a common approach for autism in Europe – European Parliamentary Event</a> first appeared on <a href="https://www.aims-2-trials.eu">AIMS-2-TRIALS - Autism Research For Europe</a>.]]></content:encoded>
					
		
		
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		<title>What can we learn about autism in adults from the eye?</title>
		<link>https://www.aims-2-trials.eu/2024/05/31/what-can-we-learn-about-autism-in-adults-from-the-eye/?utm_source=rss&#038;utm_medium=rss&#038;utm_campaign=what-can-we-learn-about-autism-in-adults-from-the-eye</link>
		
		<dc:creator><![CDATA[Scarlett]]></dc:creator>
		<pubDate>Fri, 31 May 2024 09:27:22 +0000</pubDate>
				<category><![CDATA[AIMS-2-TRIALS News]]></category>
		<guid isPermaLink="false">https://www.aims-2-trials.eu/?p=19169</guid>

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				<span class="et_pb_image_wrap "><img loading="lazy" decoding="async" width="3037" height="2053" src="https://www.aims-2-trials.eu/wp-content/uploads/Technological-retina-reading-eye_opens-in-a-new-tab-or-window-GI-View-more-by-GabrielPevide-from-Getty-Images-Signature.png" alt="" title="Technological retina reading eye_(opens in a new tab or window) GI View more by GabrielPevide from Getty Images Signature" srcset="https://www.aims-2-trials.eu/wp-content/uploads/Technological-retina-reading-eye_opens-in-a-new-tab-or-window-GI-View-more-by-GabrielPevide-from-Getty-Images-Signature.png 3037w, https://www.aims-2-trials.eu/wp-content/uploads/Technological-retina-reading-eye_opens-in-a-new-tab-or-window-GI-View-more-by-GabrielPevide-from-Getty-Images-Signature-1280x865.png 1280w, https://www.aims-2-trials.eu/wp-content/uploads/Technological-retina-reading-eye_opens-in-a-new-tab-or-window-GI-View-more-by-GabrielPevide-from-Getty-Images-Signature-980x662.png 980w, https://www.aims-2-trials.eu/wp-content/uploads/Technological-retina-reading-eye_opens-in-a-new-tab-or-window-GI-View-more-by-GabrielPevide-from-Getty-Images-Signature-480x324.png 480w" sizes="(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) and (max-width: 980px) 980px, (min-width: 981px) and (max-width: 1280px) 1280px, (min-width: 1281px) 3037px, 100vw" class="wp-image-19200" /></span>
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				<div class="et_pb_text_inner"><p>In a recent study, AIMS-2-TRIALS researchers focused on a response of the retina in the eyes, which relies on a chemical messenger, known as neurotransmitter, to regulate communication between nerve cells (neurons). The neurotransmitter of interest is γ-Aminobutyric acid (GABA), which has many roles in the central nervous system, involved in regulating stress, anxiety, and promoting sleep.</p>
<p>The team found that in the retina the response to GABA, differs in autistic people. They found that increasing the action of GABA suppresses a response to repeated light ‘flickers’ in autistic people but does the opposite in non-autistic people.</p></div>
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				<div class="et_pb_text_inner"><p><strong>Why study the eye, and what does it have to do with autism?</strong></p>
<p>Autistic people of all ages may experience sensory sensitivity, which for some can be distressing and have a negative impact on their well-being. This might include visual sensitivity, such as to bright or flashing lights. It is important to understand the mechanisms behind this, and whether there are differences at the level of the eye and/or the brain. This may inform potentially therapeutic measures for those interested in that choice.   </p>
<p>There is a growing amount of research suggesting that GABA related pathways in the brain may differ between autistic and non-autistic people.  Using a drug which activates GABA targets (arbaclofen), the team had previously found that, in autistic and non-autistic people, GABA acts differently in regions of the brain that process visual and auditory information. The team at King’s College London next wanted to investigate if there are already differences in the processing of sensory information before it reaches the brain in autistic people. And there were: the retina light response was altered by arbaclofen differently in autistic and non-autistic participants. The team found that if arbaclofen suppressed light responses in the retina in autistic people, it had also suppressed auditory responses in brain (in their previous <a href="https://pubmed.ncbi.nlm.nih.gov/37852957/">study</a>). The retina may provide an accessible window onto brain GABA function. Moreover, the greater the suppression of light response in the retina (and auditory response in the brain), the more autistic characteristics were endorsed by participants in the study. This suggests that differences in how GABA functions in the central nervous system in autism may contribute to differences in autistic characteristics.</p>
<p>&nbsp;</p>
<p><strong>How was this study done?</strong></p>
<p>This study utilised the ‘<a href="https://pubmed.ncbi.nlm.nih.gov/38130022/">shiftability’</a> paradigm, giving a one-off dose of a medication or placebo, to see who may or may not respond biologically to a drug. There were 61 adult participants in the study, 22 were autistic people and 39 non-autistic people. On one of 2 or 3 study visits, participants were given a single dose of either a placebo or a low or high dose of arbaclofen. Neither the participant nor the researchers knew whether a placebo or arbaclofen would be administered. The order of administration of placebo and arbaclofen on visits was randomised. On each visit, participants were then exposed to a flashing light in the right eye using a handheld RETeval portable instrument. RETeval measures the light response of the retina &#8211; the electroretinogram (ERG) – and takes only a few minutes.  </p>
<p>&nbsp;</p>
<p><strong>Why does this study matter?</strong></p>
<p>This study helps us understand that how GABA regulates the processing of sensory information is different in autistic and non-autistic people. It also has some practical implications. This relatively simple and easily implemented ERG technique opens the potential for the retina to be used as a ‘proxy’ for brain responses to drugs, and have applications in other areas in neuroscience and psychology.  The measurement of retinal activity could for example provide a means to identify individuals who might benefit from participating in clinical trials of arbaclofen and other possible medical interventions.  Autistic people also have different views and preference with regards to clinical trials and medications. However, for those who are interested in having the choice of medications, understanding, and predicting an individual’s own response to a particular medication could be important part of the decision-making process.</p>
<p>&nbsp;</p>
<p><strong>Want to know more?</strong></p>
<p><a href="https://www.jneurosci.org/content/44/14/e1218232024">See the paper here</a>: <a href="https://www.jneurosci.org/content/44/14/e1218232024">https://www.jneurosci.org/content/44/14/e1218232024</a></p>
<p><a href="https://www.maudsleybrc.nihr.ac.uk/posts/2024/april/chemical-regulates-light-processing-differently-in-the-autistic-and-non-autistic-eye-new-study-finds/">Read the press release here: https://www.maudsleybrc.nihr.ac.uk/posts/2024/april/chemical-regulates-light-processing-differently-in-the-autistic-and-non-autistic-eye-new-study-finds/</a></p>
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			</div></p>The post <a href="https://www.aims-2-trials.eu/2024/05/31/what-can-we-learn-about-autism-in-adults-from-the-eye/">What can we learn about autism in adults from the eye?</a> first appeared on <a href="https://www.aims-2-trials.eu">AIMS-2-TRIALS - Autism Research For Europe</a>.]]></content:encoded>
					
		
		
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		<title>Autism Without Boarders Award Event 2023</title>
		<link>https://www.aims-2-trials.eu/2024/02/15/autism-without-borders-award-event-2023/?utm_source=rss&#038;utm_medium=rss&#038;utm_campaign=autism-without-borders-award-event-2023</link>
		
		<dc:creator><![CDATA[Scarlett]]></dc:creator>
		<pubDate>Thu, 15 Feb 2024 14:04:02 +0000</pubDate>
				<category><![CDATA[AIMS-2-TRIALS News]]></category>
		<guid isPermaLink="false">https://www.aims-2-trials.eu/?p=18970</guid>

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				<div class="et_pb_text_inner"><p><strong>Both Artist and Researcher Celebrated at the 2023 ‘AUTISM WITHOUT BOARDERS’ Award Event</strong></p>
<p>In 2023, the ‘AUTISM WITHOUT BOARDERS’ Award was held at the Institute for Research Hospitalization and Health Care (IRCCS) in Pisa, Italy in November 2023. This Award was supported by the Falanga Foundation and hosted by the Stella Maris Foundation in collaboration with AIMS-2-TRIALS Consortium Team.</p>
<p>This distinguished Award is to honour Italian researchers who have made a global impact outside of Italy in the field of Autism research. The 2023 Award was proudly presented to Adriana Di Martino, Director of the Autism Centre at the Child Mind Institute based in New York, U.S.A, for her outstanding work in brain imaging, specifically the connectivity and the co-occurrence between autism and attention deficit disorder and hyperactivity.</p>
<p>For the first time an additional award was presented, to artist Maria Bellisario for her wonderful artworks, including her winning piece <em>‘Cactus’</em> in the ‘More Than Meets The Eye Competition’ (MTMTE). This competition celebrated the works of autistic artists, organised and co-designed by the AIMS-2-TRIALS team and members of the autism community, and it had over 61 entries from 43 autistic artists across Europe. The artwork of the other winners and participants in the competition can be seen in an online gallery on the <u><a href="https://more-than-meets-the-eye.co.uk/">MTMTE website</a>.</u></p>
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				<div class="et_pb_text_inner"><p style="text-align: center;"><img loading="lazy" decoding="async" src="https://www.aims-2-trials.eu/wp-content/uploads/Cactus-1-352x500.jpg" width="352" height="500" alt="" class="wp-image-18979 alignnone size-medium" /></p>
<p style="text-align: center;"><span style="font-size: small;">Artwork: <em>Cactus by <span>©</span>Maria Bellisario</em></span></p>
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				<div class="et_pb_text_inner"><p>A key highlight at this awards event was the interview with Professor Andrea Pagano, who has supported Maria on her artist journey for several years, speaking about both their personal and professional experiences together. Maria’s artwork was additionally celebrated in the local newspaper and her winning work was displayed at the award event, alongside other pieces of her works.</p>
<p>A massive congratulations to both Adriana and Maria on their awards.</p></div>
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				<div class="et_pb_text_inner"><p style="text-align: center;"><span style="font-size: small;">Image: Artworks displayed by <span>©</span>Maria Bellisario</span></p></div>
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			</div></p>The post <a href="https://www.aims-2-trials.eu/2024/02/15/autism-without-borders-award-event-2023/">Autism Without Boarders Award Event 2023</a> first appeared on <a href="https://www.aims-2-trials.eu">AIMS-2-TRIALS - Autism Research For Europe</a>.]]></content:encoded>
					
		
		
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		<title>Art &#038; Science Competition and Exhibition</title>
		<link>https://www.aims-2-trials.eu/2024/02/05/more-than-meets-the-eye-art-competition/?utm_source=rss&#038;utm_medium=rss&#038;utm_campaign=more-than-meets-the-eye-art-competition</link>
		
		<dc:creator><![CDATA[Scarlett]]></dc:creator>
		<pubDate>Mon, 05 Feb 2024 14:19:01 +0000</pubDate>
				<category><![CDATA[AIMS-2-TRIALS News]]></category>
		<guid isPermaLink="false">https://www.aims-2-trials.eu/?p=18939</guid>

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				<span class="et_pb_image_wrap "><img loading="lazy" decoding="async" width="4320" height="2160" src="https://www.aims-2-trials.eu/wp-content/uploads/banner-correct.png" alt="" title="banner correct" srcset="https://www.aims-2-trials.eu/wp-content/uploads/banner-correct.png 4320w, https://www.aims-2-trials.eu/wp-content/uploads/banner-correct-1280x640.png 1280w, https://www.aims-2-trials.eu/wp-content/uploads/banner-correct-980x490.png 980w, https://www.aims-2-trials.eu/wp-content/uploads/banner-correct-480x240.png 480w" sizes="(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) and (max-width: 980px) 980px, (min-width: 981px) and (max-width: 1280px) 1280px, (min-width: 1281px) 4320px, 100vw" class="wp-image-18941" /></span>
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				<div class="et_pb_text_inner"><p style="text-align: center;"><!--StartFragment --><strong><span class="cf0">To raise awareness about autism, challenge misconceptions, and promote neurodiversity, members of the Cambridge study team working on AIMS-2-TRIALS collaborated with a group of six autistic people and parents of autistic people (A-Reps) to design a creative project that combines art and science.</span></strong><!--EndFragment --></p></div>
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				<div class="et_pb_text_inner"><h3 style="text-align: center;"><span style="color: #000000;"><strong>More than meets the eye.</strong></span></h3></div>
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				<div class="et_pb_text_inner"><p>The theme ‘More than meets the eye’ was chosen to challenge perceptions of autism through the lenses of art and science. Art has the potential to help us gain a deeper understanding of autistic people’s experiences, feelings, thoughts, and impressions. In a different, but equally important, way science expands our knowledge of autism. Both encourage us to view autism beyond our first impressions and understand the diversity of people’s experiences.</p>
<p>There are many autistic creatives, and the group wanted to showcase this through the project. There can be a stereotype that autistic people are only interested in science and technology, but this isn’t true for all autistic people. Expressing science through art can open up science to a wider audience by enhancing understanding and accessibility. The group designing the project also wanted to give autistic people visibility in a way that allows them to control the narrative about their autism by expressing their autism through art.</p></div>
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				<span class="et_pb_image_wrap "><img loading="lazy" decoding="async" width="6912" height="3456" src="https://www.aims-2-trials.eu/wp-content/uploads/1.png" alt="" title="1" srcset="https://www.aims-2-trials.eu/wp-content/uploads/1.png 6912w, https://www.aims-2-trials.eu/wp-content/uploads/1-1280x640.png 1280w, https://www.aims-2-trials.eu/wp-content/uploads/1-980x490.png 980w, https://www.aims-2-trials.eu/wp-content/uploads/1-480x240.png 480w" sizes="(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) and (max-width: 980px) 980px, (min-width: 981px) and (max-width: 1280px) 1280px, (min-width: 1281px) 6912px, 100vw" class="wp-image-18952" /></span>
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				<div class="et_pb_text_inner"><h3 style="text-align: center;"><span style="color: #000000;"><strong>The design process.</strong></span></h3></div>
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				<div class="et_pb_text_inner"><p>The study team and A-Reps worked together to design the project and what it would include. The group decided to run a competition to gather artwork from autistic artists that could be displayed as an exhibition on the more than meets the eye website.  The visual look and content of the site was designed collaboratively. Where there were different options within the group, votes were used or ranking of preferences to make decisions.</p>
<p>It was important to the group that the competition was as accessible as possible, so they chose to have categories for people requiring support with their entry to the competition and those not requiring additional support. As the project (AIMS-2-TRIALS) and members of this group are from across Europe, it was key to enable entry to the competition from a range of countries across Europe.</p>
<p>The group nominated judges to review the artwork which included autistic artists as well as people involved in running art galleries and art projects that benefit neurodiverse people. The group then ranked the nominations to come up with the 3 preferred judges. </p>
<p>Sarah Douglas an autistic research advisor, and member of the project team, reflected<em> &#8220;Being involved with the Arts and Science WG has been a real pleasure. It has been great to have an opportunity to work with my other A-Reps to challenge stereotypical tropes that autistic people are only interested in tech. Seeing the art work that was entered into the competition was a real joy and a testament to the creative talent of autistic people.&#8221;</em></p></div>
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				<div class="et_pb_text_inner"><h3 style="text-align: center;"><span style="color: #000000;"><strong>Key features of the project.</strong></span></h3></div>
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				<div class="et_pb_text_inner"><p><a href="https://more-than-meets-the-eye-autism.com/">The ‘more and meets the eye’ website</a> was designed to host the competition, which was launched in early April 2023 and ran for 5 months. It now hosts the competition outcome and gallery.</p>
<p>The site includes a <a href="https://more-than-meets-the-eye-autism.com/science-of-autism/discussion-groups/">quiz</a> which aims to challenge autism stereotypes, designed and written by the group and a generating word cloud which asks the question ‘what do autistic people want from research?’. It also features <a href="https://more-than-meets-the-eye-autism.com/science-of-autism/discussion-groups/">discussion videos</a> between A-Reps and researchers that have been illustrated to give a visual representation of the conversation, and videos from AIMS-2-TRIALS researchers describing their work.</p>
<p>Art created for the competition includes a wide range of styles and media, from painting to digital art, and even poetry. Entries were received from 6 countries across Europe. All of the artwork expresses the diverse ways that autistic people experience the world, and each piece of art submitted to the competition shows a unique perspective on autistic life that is always more than meets the eye.</p></div>
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			</div>The post <a href="https://www.aims-2-trials.eu/2024/02/05/more-than-meets-the-eye-art-competition/">Art & Science Competition and Exhibition</a> first appeared on <a href="https://www.aims-2-trials.eu">AIMS-2-TRIALS - Autism Research For Europe</a>.]]></content:encoded>
					
		
		
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		<title>Bridging the gap: AIMS-2-TRIALS collaborators advocate for neurodiversity-affirming research</title>
		<link>https://www.aims-2-trials.eu/2023/10/18/bridging-the-gap-aims-2-trials-collaborators-advocate-for-neurodiversity-affirming-research/?utm_source=rss&#038;utm_medium=rss&#038;utm_campaign=bridging-the-gap-aims-2-trials-collaborators-advocate-for-neurodiversity-affirming-research</link>
		
		<dc:creator><![CDATA[Tracey Parsons]]></dc:creator>
		<pubDate>Wed, 18 Oct 2023 10:18:23 +0000</pubDate>
				<category><![CDATA[AIMS-2-TRIALS News]]></category>
		<guid isPermaLink="false">https://www.aims-2-trials.eu/?p=18795</guid>

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				<div class="et_pb_text_inner"><p><img loading="lazy" decoding="async" class="wp-image-18867 size-thumbnail alignleft" src="https://www.aims-2-trials.eu/wp-content/uploads/teachers-5499190_1280-crop-150x150.jpg" alt="" width="150" height="150" />A groundbreaking shift is needed in the field of autism research to bridge a historical divide between researchers and the autistic community. A recent commentary, co-authored by experts from AIMS-2-TRIALS in collaboration with international institutions and <a href="https://www.aims-2-trials.eu/about-aims-2-trials/team/autism-representatives/">Autism Representatives</a>, spotlights the importance of researchers working closely with autistic individuals representing diverse characteristics and support needs.</p>
<p>The commentary, titled ‘Bridge-building between communities: Imagining the future of biomedical autism research’, outlines a series of recommendations designed to foster trust and collaboration between researchers and autistic communities. It outlines how biomedical science needs to align research aims, practices, and culture with the diverse experiences and needs of the autistic community. This requires a re-conceptualisation of autism to embrace neurodiversity and ensure that the voices and perspectives of autistic people are not only heard but are deeply embedded throughout the research process.</p>
<h2>Shift in perspective</h2>
<p>Historically, autism research has been rooted in the medical model, viewing autism as a medical condition defined by a set of deficits. This stance has been driven by funding models and infrastructure that prioritise research into medical conditions.</p>
<p>However, this position has become controversial given the momentum of the Neurodiversity Movement, through which autism can be seen as part of human variation. Moreover, recent controversies in autism research have raised concerns among the autistic community relating to ethics, privacy, and transparency.  Precise terminology is also important to ensure successful progress in autism research.</p>
<p>Emily Jones, Professor of Translational Neurodevelopment at Birkbeck and a contributing author, notes: “The perceived gap between the perspectives of the autistic community and the research community raises the risk of the research not being useful to the community it aims to help, and the halting of scientific progress. We are at a critical juncture, which led to the development of this report.”</p>
<p>There is currently a shortage of rigorously evidenced support strategies for autistic people, so there needs to be effective tools to support autistic people and at the same time avoid stigmatising them. The authors highlight that research will also benefit from a more individualistic understanding of the autistic experience, which will help pave the way towards precision medicine and better encompassing the diversity of autism.</p>
<h2>Collaborative journey</h2>
<p>Sarah Douglas, an autistic research advisor, reflected: “Being a co-author and equal creative partner in this Bridge-Building paper-writing team has been a great experience of genuinely collaborative co-production. It has been a space in which I have felt heard and was able to hear others as we worked together to explore and suggest a better future for autism research that genuinely makes life better for autistic people and their families.&#8221;</p>
<h2>Vision for a better future</h2>
<p>The authors outline several recommendations to foster a neurodiversity-affirmative research culture, including:</p>
<ul>
<li>establishing participatory research practices,</li>
<li>involving the autistic community in research design,</li>
<li>considering the impact of research on group-harm and stigma,</li>
<li>engaging closely with autistic people throughout the research process, from the development of research designs to ongoing consultations, including publication and dissemination.</li>
</ul>
<p>Achieving this authentic participatory research requires changes at both individual and operational levels, with a focus on making engagement the norm and rewarding, with an ultimate benefit on the research itself. The authors call for robust support, a reconsideration of funding narratives, resources and infrastructure.  For example, funders need to support smaller preliminary scope-setting and community engagement initiatives, as well as providing dedicated funding to facilitation systems and discussion forums. Researchers also need effective training to engage effectively with the autistic community.</p>
<h2>Neurodiversity-affirmative research</h2>
<p>The insights provided by the authors clearly highlight the need for rapid change in field of autism research. The neurodiversity-affirmative approach promises to ensure that research aligns with the values and needs of the community it serves. The researchers emphasise that embracing a culture of inclusivity, partnership, and respect for the voices of autistic people, can unlock the full potential of biomedical science to enhance the lives of autistic people and their families.</p>
<h2>Further information</h2>
<p>Authors of the report include experts from Birkbeck, King’s College London, University of Cambridge, Brighton and Sussex Medical School, University of Manchester, South London and Maudsley NHS Foundation Trust, Université Paris Cité, Trinity College Dublin, University of Toronto and the Community Health Centre Domzale, Slovenia, alongside members of the autism community.</p>
<p>See the <a href="https://www.bbk.ac.uk/news/researchers-call-for-changes-to-how-autism-research-is-conducted">Birkbeck press release</a></p>
<p><strong>Reference to the original article: </strong></p>
<p>Heraty, S., Lautarescu, A., Belton, D. <em>et al. </em>(2023). <a href="https://www.sciencedirect.com/science/article/pii/S0092867423008589"><strong>Bridge-building between communities: Imagining the future of biomedical autism research</strong></a>. <em>Cell</em>, Volume 186, Issue 18. Pages 3747-3752.</p></div>
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			</div>The post <a href="https://www.aims-2-trials.eu/2023/10/18/bridging-the-gap-aims-2-trials-collaborators-advocate-for-neurodiversity-affirming-research/">Bridging the gap: AIMS-2-TRIALS collaborators advocate for neurodiversity-affirming research</a> first appeared on <a href="https://www.aims-2-trials.eu">AIMS-2-TRIALS - Autism Research For Europe</a>.]]></content:encoded>
					
		
		
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