Privacy and Protection

Your information is securely stored on the Matrix data platform, which uses robust measures to protect participant privacy. You can read more about Matrix security here.

No Sale of Data:
Your identifiable data will never be sold.

Controlled Sharing:
With appropriate approvals, de-identified data may be shared with researchers who are focused on improving outcomes for individuals with RUNX1-FPD. All external research proposals are reviewed to ensure that data is used responsibly and in alignment with patient-centered goals.

Emotional Risks:
Some questions related to your health history may bring up emotional responses, similar to completing forms at a doctor’s office. If you experience distress or would like additional support, please do not hesitate to reach out to the study team.