Frequently Asked Questions

Is there a cost to participate?

No. All study-related tests and procedures are provided at no cost.

How will my privacy be protected?

All personal information is replaced with an ID number. Your data and samples are stored on a secure Mount Sinai server with limited access to ensure confidentiality.

Will participation or the results impact my ability to get healthcare or insurance?

No. It is illegal for health insurance and employers to discriminate using genetics under a federal law called GINA.

Why should I consider joining the INDEED study?

Participating might help you or your loved one find answers regarding your or their disease. You or your loved one will contribute to research that may improve diagnosis and treatment for others with rare diseases.

Can I leave the study after I join?

Yes. Participation is voluntary. You or your loved on may withdraw at any time without it affecting your or their medical care.