Celebrating the Simons Simplex Collection
At a celebration of the Simons Simplex Collection (SSC) in New York City, one group was thanked by every speaker: the families who have given their time, energy, and insight to make the SSC a reality.
On 21 October, 2011, more than 100 investigators and clinicians who had worked together on the Simons Simplex Collection (SSC) gathered in New York City to celebrate a landmark achievement in autism research. Between 2006 and 2011, these teams—working out of 12 university clinics across the U.S. and Canada—painstakingly amassed a wealth of information crucial to autism researchers from nearly 2,800 families with just one child on the autism spectrum, also known as ‘simplex’ families.
These families are the heart of the project. Mothers, fathers, children on the autism spectrum, and their siblings have all contributed, coming to university clinics for evaluations, interviews, and blood draws. Without their willingness to give their time and share their stories, the sterling team that had been assembled and all the careful planning would have been for nothing. Finding families, recruiting them, answering their questions, and keeping them involved was and is crucial to the project’s short- and long-term success.
One after another, study coordinators who communicated with parents, clinicians who did the diagnosing and interviewing, researchers who analyzed SSC data, geneticists who received DNA samples, and project leaders expressed the depth of their gratitude to the families.
At the meeting, investigators described recent analyses of the collection’s data, which have identified a host of new genetic findings that represent a quantum leap forward in the understanding of autism. The researchers also gave talks about work in progress, and discussed ways of analyzing the data in the years to come as new technologies are developed. Jim and Marilyn Simons, who established the Simons Foundation and the SSC, expressed their hopes that the collection will spur dramatic advances in autism research.
The gathering for the large group photo gave attendees a visual sense of just how many researchers, and how many hours of effort, went into this monumental project. And while all felt pride, it was tempered by humility; the immediate task is done, but the questions that the collection will help to address remain vast.
Gerald Fischbach, Scientific Director of the Simons Foundation Autism Research Initiative (SFARI), made an important announcement at the celebration. The SSC will continue through the Simons Simplex Community @ Interactive Autism Network (SSC@IAN) – an online registry that is bringing SSC families from across North America together to keep them informed even after the university-based sites complete their work.
The SSC is such a valuable resource to autism researchers, many will want to access it and others will want to build on it by involving SSC families in future research efforts. Through SSC@IAN, families can stay involved, hear about the wealth of findings coming from the many projects using SSC data, and receive invitations to participate in new SSC-related clinic-based or online studies.