EU policy research and autism: AIMS-2-TRIALS

Aims

 A key aspect of the Cambridge team’s role in AIMS-2-TRIALS has been to co-ordinate community engagement across the whole consortium, to ensure that the voices of the autism community were consulted and listened to. To achieve this, researchers and the AIMS-2-TRIALS communications and community engagement team based at the ARC work with a group of autistic people and parents and carers of autistic people, called A-Reps. More information on A-Reps is available on the AIMS-2-TRIALS website.

The Cambridge team lead on the outreach, communication and education aspects of this project.  The project also includes policy relevant research and communication of this work to policymakers such as Members of the European Parliament (MEPs).

As part of AIMS-2-TRIALS, researchers at the ARC are also involved in a continuation of the Longitudinal European Autism project (LEAP) which involved over 700 children and adults across Europe. This study explores genetics, brain structure, patterns of brain activity, behavioural characteristics and cognitive profiles with the aim of better understanding the condition across development from childhood to adulthood. See the LEAP project page for more details on this project.

Background

AIMS-2-TRIALS is a large EU-funded grant bringing autism scientists together from across Europe. This seven-year project follows on from EU-AIMS, which ran from 2013 to 2018. AIMS-2-TRIALS is regarded as the largest autism grant ever awarded.

AIMS-2-TRIALS involves a wide range of research studies across nearly 50 partner organisations. One aspect of its research is exploring biomarkers for autism. These are biological markers that indicate whether a person has or may develop particular characteristics. As autism is a varied condition (also referred to as heterogeneity), these markers help us to understand differences between autistic people. Other aspects of AIMS-2-TRIALS include testing medication options for some aspects of autism, creating a clinical network across Europe and conducting policy research with the autism community. Visit the AIMS-2-TRIALS website to find out more about the project.

Methods

Together with Autistica and Autism-Europe, ARC staff coordinate the first European-wide autism community consultation group (Autism Representatives). This group includes autistic self-advocates as well as parents and carers of autistic people.

We carried out two policy relevant research projects, one looking at autistic people’s access to services and a second looking at policy priorities for change for autistic people. A summary of the results of these projects can be seen here. As part of this project, we have also communicated the findings to relevant stakeholders including policy makers This included an event at the European Parliament in April 2025, organised in collaboration with Autism Europe, where researchers and community members presented to MEPs and members of the public.

By managing the project’s website and social media presence, the AIMS-2-TRIALS team based the ARC update the public, autism community, clinicians and researchers on the consortium’s scientific progress, educational resources and outreach activities provided by the AIMS-2-TRIALS consortium.

The Cambridge team also lead the educational programme which has included webinars, short courses, and an art-science competition and exhibition for autistic artists.   Many of these activities were designed in consultation with members of the autism community. Some of the educational activities, such as training, were part of the Early Career Researcher Autism Network (ECRAN). ECRAN was set up by AIMS-2-TRIALS researchers at the ARC and King’s College London but is open to all early career researchers interested in autism biomarker research in Europe.

Results

Updates will be posted on the AIMS-2-TRIALS website as they become available, see AIMS-2-TRIALS news and publications pages.

Importance and Relevance

Understanding the autism community’s policy priorities is important to ensure that services and research are aligned to meet the needs and wants of the community. Influencing policy makers is a crucial step to ensure research is translated into action, working towards making services more accessible and improving support for those struggling with mental health challenges.

Community Engagement

The Cambridge team involved in AIMS-2-TRIALS lead and co-ordinate the community engagement for the AIMS-2-TRIALS consortium. More information about this can be found on the A-Rep pages of the AIMS-2-TRIALS website.

Ethics

Within AIMS-2-TRIALS, we set up an ethics working group including autism community members (A-Reps) and researchers to work collaboratively on ethical issues of importance. AIMS-2-TRIALS also have an ethics work package that oversees ethical practices across the project, as well as an external ethics advisory board.

More information can be found on the ethics pages of the AIMS-2-TRIALS website.

Funder

This project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 777394. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA and AUTISM SPEAKS, Autistica, SFARI.

We believe that total transparency about the funding sources is vital for trust between autism researchers and the autism community, so would underline that EFPIA are commercial partners from the pharmaceutical industry. They make contributions in kind to AIMS-2-TRIALS but cannot profit from the research until after the research project is completed.

Collaborators

Autistica, and Autism Europe

Staff:

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