Research in the United States (but may include Canadians)

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.

Our Mission

The mission of The Porphyrias Consortium is to expand knowledge about the porphyrias and thereby benefit patients and their families.

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Join the Contact Registry


The RDCRN Patient 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.How do I join?The Contact Registry 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.

How does the Contact Registry Work?

1. Click on the name of your porphyria provided in the list to the right.
2. The Contact Registry Description and Purpose information will appear. When you are ready to join, click the "Join" button on the bottom center of your screen.
3. You will then be asked to read and agree to the Authorization Agreement
4. After you have read and agreed to the authorization, the Contact Registry form will appear on your screen.

 Select one of the types of porphyrias below to join the Contact Registry for that porphyria:

• Acute Intermittent Porphyria
• Hereditary Coproporphyria
• Variegate Porphyria
• Aminolevulinate Dehydratase Deficiency Porphyria
• Porphyria Cutanea Tarda
• Hepatoerythropoietic Porphyria
• Congenital Erythropoietic Porphyria
• Erythropoietic Protoporphyria and X-Linked Protoporphyria
  
  
• Porphyrias - Specific Type Not Yet Defined

Frequently Asked Questions about the RDCRN Contact Registry


What are the benefits of joining the Contact Registry?

• Communication of open recruitment for clinical studies of your disease
• Notice of opening of new clinical sites doing research on rare diseases
• Information on activities from affiliated awareness and advocacy groups

...and future opportunities to participate in research!

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.

Is my information kept private?

Yes. 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.