Rare Genetic Steroid Disorders Consortium

Why is your participation important?

Every patient can play an important part in helping us to find out more about congenital adrenal hyperplasia, androgen receptor defects, and low-renin hypertension: their cause, their symptoms, and effective treatments. One very important way you can help is by joining the Patient Contact Registry, and possibly taking part in a clinical trial.

What is the Contact Registry?

The RGSDC Contact Registry is a method by which patients with rare genetic steroid disorders can register themselves with the RGSDC in order to be contacted in the future about clinical research opportunities and receive updates on the progress of the RGSDC 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 nationwide registry for patients. This project is part of the Rare Disease Clinical Research Center Network, a network of clinical centers, each involved in research of specific rare disorders. This network is funded by the National Institutes of Health.

The Rare Genetic Steroid Disorders Consortium has been established to collect information and perform research on congenital adrenal hyperplasia, androgen receptor defects, and low-renin hypertension. 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.

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 RGSDC Contact Registry. Any patient with a confirmed or suspected diagnosis of a rare genetic steroid disorder such as any form of congenital adrenal hyperplasia, androgen receptor defect, and low-renin hypertension can register.

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.

Click here to join the Contact Registry!