The AIMS Longitudinal European Autism Project (LEAP) is one of the world’s largest and most comprehensive observational studies on autism. It followed a group of autistic and non-autistic people aged between 6 and 30 years old in the UK, the Netherlands and Germany over a four-year-period.
The study collected large amounts of information relating to behaviour, cognition, co-occurring conditions, outcomes, brain structure, brain function and genetics. The resulting dataset involves many forms of deidentified research data, including processed MRI, eye tracking, EEG, questionnaire data, coded interview data, cognitive task, and genetics data. Some of the participants in the study consented to the sharing of their data for further research purposes via a platform hosted by ELIXIR, an organisation that coordinates life science resources across Europe.
This data is extremely valuable as it could help researchers to build on the work of AIMS-2-TRIALS to better understand autism. AIMS-2-TRIALS hopes that the sharing of this data will lead to further progress in autism research and ensure the maximum long-term impact of the project.
For instance, it could shed light on how autism and several health conditions that are often seen with autism (e.g. epilepsy and anxiety) develop from childhood to adulthood could help to improve understanding of individual differences between people with autism.
“By launching the AIMS-2-TRIALS data at ELIXIR, we ensure that the immense wealth of clinical and biological information generously provided by autistic and non-autistic people and their families can continue to drive breakthroughs in autism research over the next decades,” says Julian Tillman of Roche, the project co-lead of AIMS-2-TRIALS.
“Partnering with ELIXIR allows us to move beyond isolated data silos and integrate our findings into a cohesive infrastructure, empowering the global scientific community to accelerate the development of personalised health solutions and improve outcomes for autistic people.”
The goal is to enable robust research that benefits the autism community, and for that reason AIMS-2-TRIALS has put together a detailed data access procedure. A committee consisting of AIMS-2-TRIALS researchers and autism community members, including autistic people and parents or carers of autistic people (known as A-Reps in the AIMS-2-TRIALS project) assesses the data requests in the proposals according to a range of criteria, examining the question being asked, the type and amount of data being requested and whether it matches the research question, evaluating whether the data will be used ethically and whether enough community engagement has been planned.
These steps are necessary to ensure that the data that has been given by members of the autism community is being used in a respectful way and that the research that arises from it will benefit the community.
“Having A-Reps’ input on the data sharing plans and procedures via a dedicated data sharing working group has been essential to help ensure that ethical safeguards are implemented to protect autistic participants’ study data,” says Sarah Douglas, AIMS-2-TRIALS A-Rep.
Community engagement has been a cornerstone of the AIMS-2-TRIALS project, and within the data requests the project expects to see an explanation of efforts made to engage the autism community within new avenues of research. Taking the A-Reps’ views into consideration at every step of the research process has led to more meaningful and ethical research by AIMS-2-TRIALS, and the goal is that other research projects will follow this example, and collaborate with the community to drive impactful results.
“Since the beginning of the project, the involvement of the A-reps has played an important role in shaping the direction of the work,” says Katrien Van den Bosch, AIMS-2-TRIALS A-Rep. “This collaboration has helped ensure that the data sharing approach is practical, relevant, and built around the real needs of the autism community.”
Beth Oakley, the scientific co-ordinator of AIMS-2-TRIALS, outlined how the project has benefited from the A-Reps throughout the project and how the data access process has been shaped by the community.
“It has been a privilege to learn from, and work with, AIMS-2-TRIALS A-Reps colleagues in launching AIMS-2-TRIALS data via ELIXIR Luxembourg. Data sharing, particularly in autism research, is an incredibly sensitive area. It has been of utmost importance to design a rigorous data access process that prioritises community concerns and preferences and is delivered to the highest ethical standards. This would not have been possible without community input.”
AIMS-2-TRIALS is supported by the Innovative Medicines Initiative, a partnership between the European Union and the European pharmaceutical industry.