Frequently Asked Questions about Simons VIP Connect Participation

How can I participate?

As a Community Member: Registering to become a member of the online community does not automatically enroll you in the research study, but provides you with access to additional information and support resources, including discussion forums,the ability to explore the community, connect with other families, and submit questions to our team of experts.

As AStudy Participant: With all the benefits of a Community Member, you will also connect with study coordinators who will walk you through the process of joining the study. If eligible, you’ll be asked to complete online research surveys and share some medical information. Read more about the research study here.


What is Phase 2?

Phase 1 of the Simons VIP study ended in early 2014. Phase 2 of the study allows families to participate without traveling. We have also expanded the number of genetic changes we are studying.

We met recruitment goals for Phase 1 of the project with more than 200 participating families evaluated at one of our 5 research centers! Phase 2 is allowing us to expand and gather information from even more families through online surveys and phone interviews. To learn more about the research study, click here.