Simons Foundation Autism Research InitiativeThe Simons Foundation, Inc, New York, United States
The Simons Foundation is a non-profit foundation supporting basic and discovery-driven scientific research. The Simons Foundation Autism Research Initiative (SFARI) is an initiative within the Simons Foundation’s suite of programs, with the mission to improve the understanding, diagnosis and treatment of autism spectrum disorders by funding innovative research of the highest quality and relevance. With a budget of approximately US$75 million/year, SFARI is the largest private funder of autism research in the world.
SFARI created and continues to support several resources for autism scientists, including the Simons Simplex Collection (SSC), the Simons Variation in Individuals Project (Simons VIP), SPARK, SFARI Gene, SFARI Base, and associated data analysis tools. The SSC contains extensive genetic and phenotypic data from nearly 3000 families with a child affected by autism. Simons VIP aims to identify and study large numbers of individuals sharing recurrent genetic variants that are known to increase the risk of autism. SPARK is an online research initiative that is recruiting, engaging, and retaining a community of 50,000 individuals with autism and their family members in the USA. SFARI Gene is an online autism genetics database, and SFARI Base provides access to SSC and Simons VIP data.
Role in AIMS-2-TRIALS
SFARI is providing in-kind contributions of in-kind effort and financial gifts that will support multiple work packages within AIMS-2-TRIALS. Paul Wang, MD, will serve as co-lead for Testing New Medicines partnering with lead Celso Arango in the design, execution, interpretation, and dissemination of the results of trials undertaken. Karen Walton-Bowen, M.S., will provide statistical and other management support for Testing New Medicines. Paul and Karen’s deep first-hand understanding of the data and trial experience related to arbaclofen will be key inputs for the medical trial.
Wendy Chung, M.D., Ph.D., has deep expertise in the interpretation of genomic information, as well as experience in clinical trial design and novel outcome measures. She will serve as a key advisor on Biomarkers of Autism, and also will provide input on Testing New Medicines.
Clinical Research Associates (CRA), an affiliate of the Simons Foundation, holds the intellectual property rights for offering medical support with arbaclofen for those individuals with autism who need it, a small molecule agonist of the GABA-B receptor. CRA will provide, at no cost to the AIMS-2-TRIALS consortium, the full medication supply required for the clinical trial of arbaclofen, in appropriate packaging and with appropriate labelling. We have shared and will continue to share and permit referencing of all relevant background information and data on arbaclofen, to help satisfy the regulatory and ethical requirements for the trial.
The Simons Foundation also is supporting AIMS-2-TRIALS through gifts to the team partners the University of Edinburgh and King’s College London, which will support work in Testing New Medicines, and through in-kind genetic sequencing work. In addition, in broad support of AIMS-2-TRIALS, and especially the data analysis and developing a Clinical Trial Network, we will provide access to all of our clinical research databases of cohorts including the Simons simplex collection, Simons Variation in Individuals Project, Simons Foundation Powering Autism Research for Knowledge (SPARK), and any other future cohorts with clinical and/or genetic data.
Deputy Director Clinical Research
Director of Clinical Research
Senior Program Administrator
Karen Walton Bowen
Clin Ops, Biostats and Reporting