After 13 Years, Pioneering Autism Research Registry Shuts Down
July 15, 2019
By: Courtney Perkes
Source: Disability Scoop
A first-of-its-kind autism registry that collected research data from thousands of families across the country has closed after 13 years and the publication of hundreds of studies on everything from bullying to mood disorders.
The Interactive Autism Network, known as IAN, ended operations at the end of June after helping its primary funder, the Simons Foundation, launch a broader research initiative, said Dr. Paul Lipkin, director of IAN. The new registry, SPARK (Simons Foundation Powering Autism Research for Knowledge), started in 2016 with a goal of collecting genetic data from 50,000 families.
Parents of children with autism and adults on the spectrum had participated in IAN by responding to online surveys on topics such as medical history, social communication and therapies and updated the information they provided over time. Additionally, IAN put willing families in touch with outside researchers seeking study participants.