The RDCRN Patient Contact Registry is a method by which patients with rare diseases can register themselves with the RDCRN in order to be contacted in the future about clinical research opportunities and updates on the progress of the research projects. The contact registry is anonymous and free of charge.
You (or your child) are invited to participate in a research project that will develop a nation-wide registry for patients.
Benefits of Joining the Contact Registry include:
- Communication of open recruitment for clinical studies of your disease
- Notice of opening of new clinical sites doing research on rare diseases
- Information on activities from affiliated awareness and advocacy groups
...and future opportunities to participate in research!
Who Can Join the Contact Registry?
We encourage patients from all 50 states in the United States and every country to join the Contact Registry.
How does the Contact Registry Work?
After you have read and agreed to the Authorization, the Registry form will appear on your screen. This form asks you for information such as your (or your child's) name, address, birth date, place of birth, email address, or items relevant to your (or your child's) disorders.
Once you have entered and submitted this information online, the data will be stored in a secure, computerized database. No personal identifying information (such as your name, address, telephone number) will be given to anyone without your expressed approval.