Connect My Variant

About the Study

Researchers at the University of Washington (UW) are recruiting participants with known inherited mutation.  We aim to help participants talk to relatives (both immediate and distant) about their family history and genetic test results, to connect them with others who have the same variant, and to their family trees together.  The study provides tools and resources to help at-risk relatives get genetic testing through their own local doctors.

Find out more at http://connectmyvariant.org/.

What the Study Entails

You do not have to travel to participate. Study activities self-driven.

After eligible participants contact and consent to be part of the study, they will be asked to choose some or all study activities, which they can do at their own pace. These include:

• Connecting with others known to have your same variant through variant-specific online forums.
• Using ancestry DNA testing to find distant relatives who may be at-risk for your variant and contact these individuals with guidance from the UW team.
• Getting help from professional genealogists (paid for by the study) who to link your family with those of others that have your variant.
• Participating in interviews with study staff to help us understand your experience and improve resources for others.
• Contacting close and distant relatives at-risk of having your variant to encourage them to get genetic testing and prevent disease.

Study Lead Investigator

Brian H. Shirts, MD, PhD
Associate Professor
University of Washington