How did it work?

In the LEAP study, participants and their families provide information about themselves using questionnaires, interviews, paper-and-pencil or computer tasks and games, brain imaging and biological samples like saliva and blood. To complete all of these tasks, participants and their families usually visit a local site on two different days. 

Who took part? 

Since the beginning of the study, well over 700 families in England, Germany, the Netherlands, Sweden and Italy have taken part. When the study first launched, LEAP participants were aged between 6-30 years, including males and females and individuals with intellectual disability. We are immensely grateful to all of the dedicated families who have volunteered their time to make this research possible and who continue to show their commitment to the project. Sites in the UK, Germany and the Netherlands have now completed follow ups with this group of participants at three timepoints in total, spanning 10 years.

What did the LEAP study involve?

Questionnaires and interviews – We collected information about the development, preferences and experiences of LEAP participants, such as their social activities, routines, sensory experiences and mood. We also asked about family history of different neurodevelopmental and psychiatric conditions.

Cognitive tasks and games – We asked LEAP participants to complete a series of paper-and-pencil and computer tasks and games that measure processes like attention, memory, sensory and emotion processing or social understanding.

Sensory measures – including auditory and tactile tasks

Brain imaging – LEAP volunteers took part in two different kinds of brain imaging. One is called an MRI scan, where participants lie still inside a machine that takes a series of images of their brain while they either watch a video, play some games or take a nap. Brain activity was also recorded using EEG, where participants wear a cap on their head (like a swimming cap) with lots of small electrodes that pick up the electrical signals that are sent between different brain cells.

Biological samples – Some participants also provided a sample, like saliva or blood during one of their visits if they are happy to do so. These samples are being used to measure immune and hormone activity or provide genetic information related to how the brain develops.

What can this data tell us?
The data collected as part of leap can help researchers:

• Understand how autism and commonly co-occurring health conditions (e.g. epilepsy, anxiety) develop from childhood to early adulthood.
• Identify features of autism and its co-occurring health conditions that can be measured, called ‘biomarkers’.
• Improve understanding of co-occurring characteristics that are particular areas of concern for some autistic people such as mental health conditions and sensory characteristics.
• Understand individual differences between autistic people, and what these characteristics may predict later in development.

Identifying biomarkers could help to develop more effective treatment options, in the future, that are better tailored to each person’s needs, preferences and strengths.