Create an account for yourself. Data will be stored securely without identifiable information.
Consent to share your data, provide an optional research sample, and be contacted for future research studies.
Add a Child with a Genetic Change
If you have a child who has the genetic change, add them and complete their consent.
Upload your or your child’s genetic lab report. We’ll review it to make sure you’re in the right place.
Complete Medical History Phone Call
Schedule your medical history phone call with our genetic counselor. During the call you’ll be asked for a detailed medical and family history that we will track over time.
Take Online Surveys
Check your dashboard for surveys. Follow us on social media for study updates and helpful information!
Provide a Sample for Research Storage
If interested your family may participate in a blood draw or saliva collection. Researchers may use these samples to learn more about the genetic change.
We add surveys to the study as needed, and some surveys are repeated every year, along with a follow-up medical history phone call. The study team tracks updates over time.