The Porphyrias Consortium

 

Join the RDCRN Contact Registry for Porphyrias

Join the Contact Registry

The RDCRN 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.

By joining the Contact Registry, you will be asked to provide information about you (or your child) and how you can be contacted. The RDCRN will use that information in two ways:

  1. To contact individuals who might qualify for participation in a research study
  2. To learn more about your disease. This will help these researchers better design and conduct clinical studies.

This informaton is collected by the RDCRN Data Management and Coordinating Center and is not shared with anyone without your expressed permission.

You will be given the option to share the information you enter into the RDCRN Contact Registry directly with PC study doctors and research staff.


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:


Frequently Asked Questions about the RDCRN Contact Registry

What are the benefits of joining the Contact Registry?

...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.

Option to Share Your Contact Information

You now have the choice to share your contact information with other researchers and with patient advocacy groups. With this information, these researchers or groups will be able to contact you directly to ask whether you'd be interested in participating in upcoming research studies that should advance our ability to treat people with your disease. No personal identifying information (such as your name, address, telephone number) will be given to anyone without your expressed approval