The Simons Variation in Individuals Project (Simons VIP), sponsored by the Simons Foundation, is a new research initiative aimed at better understanding the medical, learning, and behavioral features of individuals with copy number variations (CNVs) that may be associated with autism or developmental delay. A team of experts collects detailed clinical information from families with CNVs with the hope of helping clinicians and families understand the relationship between specific genetic changes and the brain’s development. All clinical evaluation data, DNA samples and cell lines are available for use by IRB approved researchers through www.sfari.org.
In addition to the research study, Simons VIP Connect is an online community for individuals with CNVs and their families. The community aims to allow families to contact each other, provide support and learn more about individuals with CNVs.
The community initially reached out to individuals with a 16p11.2 deletion or duplication and has recently expanded to include individuals with a 1q21.1 deletion or duplication. Over time other targeted CNVs may be added to the community.
Genetic counselors at Geisinger coordinate the recruitment of study participants, as well as oversee and support the online community.