EU policy research and autism: AIMS-2-TRIALS

Aims:

The ARC’s primary aim within AIMS-2-TRIALS is to ensure that the diverse voices across the autism community are heard and that the project takes the community’s priorities and concerns seriously. To this end, the Autism Research Centre is involved in the outreach, communication and education aspects of this project in collaboration with the charities Autistica and Autism Europe. ARC will also conduct research into autism policy and bring it to policy-makers 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 400 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.

Background:

AIMS-2-TRIALS is a large EU-funded grant bringing autism scientists together from across Europe. This five 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 will explore existing autism policies, factors that improve or hinder their implementation, and any gaps in current policy across Europe. We will carry our research into autism policy and communicate the findings to relevant stakeholders.

By managing the project’s website and social media presence, the team at the ARC will 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.

Educational and outreach activities will be developed for the educational programme and will include webinars, short courses, and an art-science exhibition, all co-designed by members of the autism community. Some of the educational activities are part of the Early Career Researcher Autism Network (ECRAN). ECRAN is 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.

ARC will also continue its participation in the data collection and analysis aspects of the Longitudinal European Autism Project (LEAP).

Results:

Updates will be posted on the AIMS-2-TRIALS website as they become available.

Importance and relevance:

Establishing the autism community’s policy priorities is important to ensure that services and research are aligned to such priorities. Influencing policy makers is a crucial step to ensure research is translated into action, working towards making the world more autism-friendly and reducing the unacceptably high levels of poor mental health in autistic people.

Discovering biomarkers for autism may be important for identifying subgroups within the autism spectrum. These subgroups may be relevant for determining the most appropriate therapy, support or treatment, as well as identifying the diagnosis and prognosis for each person who may want support.

Ethics:

The ARC’s ethical views are transparent on the ARC website and newscientist article. We adopt a neurodiversity view of autism. All of our research studies are reviewed by local ethics committees.

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 5 year research project is completed.

Co-leads:

Autistica, and Autism Europe.

Staff:

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