RGSDC - What is the RGSDC?

The Rare Genetic Steroid Disorders Consortium (RGSDC) is an international group of academic medical centers, patient support organizations, and clinical research resources formed to conduct clinical research in genetic disorders of steroid metabolism, to improve the care of individuals affected with these disorders, to train young investigators in the study and care of these disorders, and to serve as a resource of information about these disorders.

The RGSDC will establish a large international cohort of patients to study the following rare genetic steroid disorders: 21-hydroxylase deficiency, 11b -hydroxylase deficiency, steroid 17a -hydroxylase deficiency, steroid 17b -hydroxysteroid dehydrogenase deficiency, androgen receptor defects, 5a -reductase 2 deficiency, steroid 3b -hydroxysteroid dehydrogenase deficiency, and apparent mineralocorticoid excess.

Funded by the National Institutes of Health (NIH), the RGSDC is part of the Rare Diseases Clinical Research Network. The overall operations of the RGSDC are directed by Dr. Maria New from the Mount Sinai School of Medicine. The primary study sites are the Mount Sinai School of Medicine, the University of Texas Southwestern Medical Center, the University of Lyon, the University of São Paolo, and the Columbia University College of Physicians and Surgeons-affiliated New York State Psychiatric Institute.