The Rare Diseases Clinical Research Network (RDCRN) Porphyrias Consortium provides expertise and experience in the diagnosis and treatment of patients with porphyria. Consisting of six leading porphyria centers in the United States, the Consortium also supports collaborative research and training.
Member centers include UTMB Health, the Icahn School of Medicine at Mt. Sinai (New York, NY), the University of Alabama at Birmingham, the University of California at San Francisco, the University of Miami (FL), the University of Utah School of Medicine (Salt Lake City, NY), the University of Washington (Seattle, WA), and Wake Forest University Health Sciences (Winston-Salem, NC).
Consortium investigators meet monthly in-person and on conference calls, and receive support through the RDCRN. The RDCRN provides the Consortium with data management support through its Data Management and Coordinating Center at the University of South Florida, as well as infrastructure support such as protocol development, data entry and warehousing, statistical consultation, site monitoring.
The Consortium has conducted industry-supported clinical trials, as well as several other studies, including a longitudinal study of all of the porphyrias.
For more information and access to the Consortium's patient registry and resources, visit https://www.rarediseasesnetwork.org/cms/porphyrias.