Development in Children and Adults

Autism Policies

The largest research study of autistic children and adults in Europe will run a third phase to track how participants develop over time.

It aims to better understand why symptoms can progress differently in different autistic people, and to identify biomarkers that are shared by some autistic people. In the future, these biomarkers could be used to predict if a person is likely to develop co-occurring symptoms or to benefit from a specific treatment. 

The study is called the Longitudinal European Autism Project (LEAP). It involves over 400 children and adults with autism, who were aged between 6 and 30 when it began in 2014. Participants each performed initials tasks to explore, for example, how they think, track what they choose to look at most, and scan their brain’s structure and function. Each task was repeated after one to two years and some of these will be repeated again, alongside some new measures, in 2020. This latest round of assessments and analysis is called LEAP-3.   

The biomarkers identified may indicate that a person has a particular version of a gene, pattern of brain activity, behavioural characteristics or cognitive profile. These biological traits could inform the development of treatments tailored to an individual’s biological profile. Although this study does not test medicines, its findings may inform the future development of personalised treatments. The research may also inform the development and use of non-medical treatments.

Autism and Epilepsy  

The LEAP study will also expand in order to investigate epilepsy in autism. Approximately 20-30% of autistic people have or will develop epilepsy. It is a major cause of early death in autism and profoundly affects a person’s quality of life. This study will involve recruiting a new group of participants who have both autism and epilepsy.

The study will explore why epilepsy is more common in autistic than in non-autistic people. It will also attempt to identify biomarkers that could be used to predict which autistic people are more likely to develop epilepsy and could help to identify when someone will have a seizure before it happens. This would, in the future, provide an opportunity for a treatment to prevent seizures, which could improve the person’s wellbeing and reduce the effect of seizures on their daily lives. 

LEAP will use Magnetic Resonance Imaging (MRI) brain scans to look at connections across the brain. It will also use a technique called electroencephalography (EEG) to record the brain’s electrical activity. This will help to identify whether there are particular characteristics in the brain’s structure or function that are specific to the combination of autism and epilepsy.

Leaders of the LEAP-3 Study

Lead organisation: Radboud University
Lead: Prof Jan Buitelaar
Principle Investigators: Prof Jan Buitelaar, Dr Eva Loth, Prof Declan Murphy, Prof Simon Baron-Cohen, Prof Sarah Durston, Prof Tobias Banaschewski
Research Centres: Radboud University, King’s College London, University of Cambridge, University Medical Centrum Utrecht, Central Institute of Mental Health

Leaders of the LEAP Epilepsy Study

Lead organisation: King’s College London (KCL)
Lead: Dr Jonathan O’Muircheartaigh
Principle Investigators: Prof Mark Richardson, Dr Jonathan O’Muircheartaigh, Prof Declan Murphy and Prof Oliver Howes
Research Centres: King’s College London, Radboud University, Karolinska Institute

Collaborators

LEAP will collaborate with a study in the United States that aims to develop biomarkers of social function and communication in autism. This study is called the Autism Biomarkers Consortium for Clinical Trials (ABC-CT). It will investigate potential biomarkers by undertaking clinical assessments, interviews with parents, and measures of visual attention and brain activity. The ABC-CT and AIMS-2-TRIALS have collaboratively used comparable biomarker measures to enable validation of results in separate groups of people from different parts of the world. Researchers in both studies will share data and knowledge in accordance with informed consent from participants and in line with national and EU regulations. The ABC-CT is led by Dr. James McPartland at Yale University and also includes: Boston Children’s Hospital, Duke University, the Seattle Children’s Research Institute, the University of California, and the University of Washington. ABC-CT is part of a public-private partnership managed through the Foundation for the NIH Biomarkers Consortium and supported by the National Institutes of Health and the Simons Foundation .