What is the Porphyrias Clinical Research Consortium?
The Porphyrias Consortium includes five of the leading porphyria centers in the United States that provide expertise and experience in the diagnosis and treatment of patients with porphyria. The staff in each Center includes porphyria physicians, researchers, research coordinators, and technical/laboratory staff. Together with the American Porphyria Foundation, the Porphyrias Consortium enables a large scale collaborative effort to develop new strategies and methods for diagnosis, treatment, and prevention of illness and disability resulting from these rare disorders. The Consortium website is a forum for disseminating information to porphyria patients and their families, healthcare professionals, and other interested parties. The website also provides a list of currently active studies with a description of each and contact information for those who are interested. Of particular importance is the Longitudinal Study with the objective of characterizing the long term course and outcomes of each porphyria. Clinical trials are being conducted to establish the safety and efficacy of new therapies leading to approval by the US Food and Drug Administration. Partial support for the Porphyrias Consortium is provided by a grant from the National Institutes of Health as part of the Rare Disease Clinical Research Network.
The mission of The Porphyrias Consortium is to expand knowledge about the porphyrias and thereby benefit patients and their families.
Within the framework of collaboration, the Porphyrias Consortium provides new and current information about the porphyrias to patients and their families, physicians and other health professionals, and the public. In addition, the Porphyrias Consortium provides training to young physicians who will be the future medical and research experts for these rare disorders.