With funding from Aligning Research to Impact Autism (ARIA), the IMPACT network brings together leading academic centres from across the USA, Canada, and the UK to address long-standing gaps in research involving individuals with significant cognitive and language impairments who require lifelong support. Despite representing a substantial proportion of the autism community, this group has historically been underrepresented in research.
A cornerstone of the IMPACT Network is a short-term natural history and clinical endpoint study that will follow children and young adults over time to better understand developmental trajectories, health needs, and differences between individuals. The study will not test treatments. Instead, it is designed to build a robust evidence base showing how symptoms and support needs evolve over time and to help establish outcome measures for future clinical trials.
The study forms part of the broader ARIA clinical research ecosystem and will enrol children with profound autism as well as children with genetically defined neurodevelopmental conditions associated with autism.
Study participants from across the UK will be invited to annual in-person visits in Oxford or London over the span of three years. The study will collect a wide variety of information to enhance our biological understanding of profound autism, such as genetic testing, neurophysiological tracking, sleep patterns, and developmental assessments. By following participants over time, the study aims to better understand how needs and abilities change, identify variability within profound autism, and uncover patterns that are currently poorly explained.
Read the full story on the Department of Paediatrics website.