Rare Diseases Clinical Research - Sent Right to Your Inbox

The RDCRN 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.

Why Join the Contact Registry?

The Contact Registry has been created to inform patients and/or parents of patients of clinical research studies. Joining the contact registry will help researchers identify and recruit patients who are eligible for participation in future research studies.

Information contained within this registry will be used for recruitment to research studies directed at improving our knowledge and treatment of these rare diseases. The continued efforts of researchers seek to improve the quality of life for all who are suffering from these rare diseases. The work of the researchers cannot occur without the partnership with patients.

YOU can help in the fight against rare diseases.

Patients who participate in research make it possible for researchers to find new treatments, create new studies, and work for the improvement of all our lives. By joining our registry, you will be contributing to the research of the Rare Diseases Clinical Research Network.

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.

Privacy

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.

How Can I Join?

Registration is done by specific rare disease. Access to the Contact Registry form for your rare disease can be done one of two ways:

If you know the name of your disease or disorder, you can access the Contact Registry through our Direct Register page

If you are unsure about the diagnoses of your disease or disorder, you may want to visit the consortium page that studies the family of diseases related to your possible disease or disorder. A list of all consortia can be found at the RDCRN Home Page.