SSC@IAN - A Model for Long-Term Follow-up

Background: The Simons Simplex Collection (SSC), a project of the Simons Foundation Autism Research Initiative (SFARI), is establishing a repository of genetic and phenotypic information from nearly 3,000 simplex families. The Interactive Autism Network (IAN), an online research initiative with more than 30,000 participants, provides raw data and subject recruitment assistance to qualified researchers. Now, the SSC has partnered with IAN to coordinate future phases of the SSC project and to maximize its usefulness to the autism research community.

Objectives: SSC@IAN will provide a vehicle for long-term engagement of SSC families – originally recruited through 13 university-based sites – for a wide variety of longitudinal research efforts carried out both online and in clinic. New data from SSC families consenting to participate in SSC@IAN will be combined with their data collected through the original SSC protocol and made available to researchers via the Simons Foundation’s online research database, SFARI Base. These efforts will provide the autism community with additional and expanding perspectives through which to explore the SSC population. This innovative collaboration will maximize the benefit the autism community derives from participating families’ contributions, now and into the future.

Methods: The Simons Foundation and IAN have formed multiple working groups to facilitate the creation of SSC@IAN – an integration of two complex research networks. Challenges overcome include coordinating technology/software, communicating the SSC@IAN concept to SSC sites’ staff, IRBs, and families, and formulating a longitudinal study plan. In the next stage, SSC Site Coordinators will reach out to SSC families, seeking their permission to share their contact information with IAN. Once permission is received, IAN will invite families to join SSC@IAN, and will register them via an online SSC@IAN consent approved by the Johns Hopkins Medical IRB. IAN will continue to work with SSC staff to securely use IAN and original SSC data for subject recruitment activities. Finally, each family’s de-indentified IAN data will be sent to SFARI Base. 

Results: Communication and training materials to help transition families into SSC@IAN have been developed, and IAN has built the online consent form that will make a family part of the special SSC registry and longitudinal study within IAN. Information technology infrastructure for project tracking and for data transfer to SFARI Base is in place. Families will begin to enroll in January 2011, and it is anticipated that all SSC families will have the ability to join the initiative by the end of 2011, maximizing the usefulness of SSC data and recruitment for the autism research community. 

Conclusions: SSC@IAN represents a unique collaborative model that combines the advantages of a self-limited research project with an online longitudinal protocol and follow-up system. Both powerful and cost effective, this model for ASD research will have the breadth and depth necessary to address this incredibly heterogeneous and complex disorder into the future.