EU-AIMS Clinical Network: Building a Large Scale European Data Resource

Background: The complexity and heterogeneity of Autism Spectrum Disorder (ASD) makes it necessary to obtain large-scale samples which are difficult to acquire from one site alone. While North American networks such as the IAN (Interactive Autism Network) and ATN (Autism Treatment Network) are increasingly active in pooling data from multiple sites for informative analysis, similar large scale collaborative efforts have been largely neglected in Europe. In response, EU-AIMS (European Autism Interventions - A Multicentre Study for Developing New Medications), a public-private consortium of leading research centres and industry, set up a unique platform to collaboratively pool European data. This will provide researchers with a resource to answer important questions about the prevalence, causes, and trends in the diagnosis and treatment of ASD, as well as boosting research capacity across Europe.

Objectives: A data sharing platform was set up to collect historical anonymous data from major ASD clinical and research institutions across Europe who are part of the EU-AIMS clinical network. This clinical network now includes 93 sites across 37 countries, giving unique access to a large and heterogeneous cohort of well-characterised ASD patients across different age groups, ability levels, countries and cultures.   

Methods: Sites within the EU-AIMS clinical network were contacted to indicate their willingness to share phenotypic, behavioural, and cognitive data for secondary analysis. The pooled data includes information on demographic and clinical characteristics (e.g. sex, age, diagnosis, co-morbidity and ethnicity), as well as core autism symptomatology (e.g. ADI-R, ADOS, SRS, SCQ, AQ), IQ (e.g. WASI, WISC) and behavioural measures (e.g. VABS, CBCL). Item level data for each measure was collected where possible.  

Results: Whilst data sharing with sites is still on-going, 20 sites situated in 9 different European countries have already completed the data sharing process. A total of 4118 individuals (males = 3220, females = 898) with a diagnosis of an ASD are currently in the database. Of those, 2226 are children (0-11 years), 1026 are adolescents (11-17 years), and 648 are adults. In addition, 672 individuals across all age groups (males = 344, females = 328) that did not meet a formal diagnosis of ASD are also characterised using these core measures. 

Conclusions: Pooling datasets across European clinical and research sites as part of EU-AIMS will help to establish a valuable resource for ASD research in Europe. In the future, this resource will not only boost research capacity, but also improve transparency, openness and research efficiency of autism research in Europe.