CureCADASIL is collaborating with members of the Clinical Genome Resource (ClinGen) team to share genetic and health information from patients affected by CADASIL through the ClinGen Patient Data Sharing Program. This information will be collected through the CureCADASIL Family Registry.
Why is data sharing needed?
When a laboratory finds a genetic change (variant) for the first time, often little is known about it. Even if a genetic variant is well understood, data sharing helps increase understanding of a condition’s features, which may help identify possible interventions and treatments. The more information collected, the better researchers will understand how genes affect health and, ultimately, how best to care for patients.
Complete these 3 steps to participate:
1. Login to your account (or create an account if you have not) at: CureCADASIL Family Registry.
2. Review and complete the ClinGen Data Sharing Program informed consent.
3. Upload a copy of your genetic test report to your account, if you have not already. If you need help getting a copy of your genetic test, contact ClinGen at firstname.lastname@example.org.
For questions about the research study, call or email ClinGen at email@example.com or 570-214-1721 (toll free 855-322-7683)
Interested in learning more about the ClinGen Data Sharing Program? And how patients sharing their genetic test data is important to CADASIL? Watch a new CADASIL Care Webinar presented by Juliann Savatt, MS, LGC from the ClinGen team.