Simons VIP Connect: Variations in Individuals Project Matches Patients

The Simons VIP project, sponsored by the Simons Foundation, is a new research initiative aimed at better understanding the medical, learning, and behavioral features of individuals with genetic changes associated with autism spectrum disorder (ASD) and developmental delay as well as the needs of their families.

In Phase 1, the project assembled a team of experts at seven premier medical centers to collect detailed clinical information from families through in-person visits. This information has helped clinicians and families understand the relationship between specific genetic changes and the brain’s development.

In Phase 2 , the study is expanding to include more families with genetic changes by expanding eligibility criteria and using online research surveys and phone interviews to allow families to participate from the comfort of their own homes.

Information from the project will be stripped of any personal identifying information and made available to qualified scientists around the world. The goal is to improve clinical care and treatment for individuals with genetic changes associated with autism and other developmental disorders.

TO PARTICIPATE:

•   You must have a documented genetic change which meets the eligibility criteria of the study.
•   Available biological parents and siblings are strongly encouraged to participate. Other family members may also be asked to participate.

NEXT STEPS — PHASE 2: Information about participants in Phase 2 will be collected remotely using online research surveys, mailed paper surveys, and phone interviews. Families who had been seen as part of the original study will also have the opportunity to participate in these remote evaluations.

Phase 2 Steps:

•  Once you express interest in participating in the study by calling, emailing, or registering online, you will complete online consent for research.
•  A study coordinator will contact you to discuss the study and request a copy of the genetics lab report to review for eligibility.
•  Eligible families will speak with a certified genetic counselor to schedule genetic testing and to discuss the family’s genetic test results.
•  As in Phase 1, families are interviewed by telephone to collect family and medical history and review medical records.
•  Participants will be asked to complete online research surveys through a secure web portal.
•  Mailed paper assessments are used for some activities that cannot be performed online.