North America

Simons Variations in Individuals Project (VIP)

Since September 2010, the Simons VIP study has been recruiting families to participate in a research study aimed to better understand the medical, learning and behavioral features of individuals with genetic changes associated with features of autism, developmental delays, and other neurodevelopmental concerns (like seizures). We also aim to identify the needs of their families while providing support through education, access to experts, and by connecting with other families.

Phase 1: (complete)
The study has met initial recruitment goals of performing in-person evaluations for 16p11.2 deletion and duplication families (Phase 1) and is no longer enrolling new subjects. To read more about what was involved in this phase of the study, please click here.

Phase 2: (ongoing)
Beginning in late 2013-early 2014, the Simons VIP study moved to Phase 2 of the study. As in Phase 1, this study will continue to offer genetic testing for eligible relatives, request medical and family history information, and collect developmental and cognitive assessments. While Phase 1 involved travel to study sites, in Phase 2, the collection of family, medical, development and behavior information will involve families completing online research surveys (which can be sent by mail if access to the internet is limited) and phone interviews from the comfort of their own homes.

Phase 2 will allow the research study to expand in multiple ways:

  1. More families can participate:
    • By using this at-homeformat, families will not need to travel and the study will be able to include families who are able to read and understand English from around the world.
    • In Phase 1, the study had included only families with a very specific deletion or duplication of the 16p11.2. In Phase 2, the study will include families who have slightly different variations of the genetic change(s) of interest.
  2. Information can be collected across a longer period of time:
    • Participating families will be asked to periodically update the information in the online research surveys. This will allow us to study how these genetic changes differ over time.
  3. New genetic changes will be studied:
    • Collecting remote information will require fewer clinical time and scheduling resources. This will allow the project to add new genetic changes of interest and to collect informationto help more families.

For additional information or if you are interested in participating in the research study, please check out the links below: