Welcome to the IPPF’s P/P Disease Registry! A registry is a collection of data used for research or comparative study. That’s what we’re hoping for!
The more data we can collect, the better the information we can give to researchers, the sooner they can find better treatments, earlier diagnosis, and one day – A CURE!! The Pemphigus-Pemphigoid Registry is designed to help the medical and research community understand illness trends, treatment outcomes, disease burden, and some important demographic information about patient(s) age and gender. With this vital information from large numbers of participants we can better advocate for resources to improve patient support and doctor education, and accelerate research discovery.
It takes about 15 minutes of your time to answer some simple treatment, medication, and lifestyle questions. That’s it! Your information is collected, stored, and ready when researchers need data on pemphigus and pemphigoid patients. If you have not received your personal, email invitation and link from the IPPF, you have two choices: contact us and we’ll send it out to you, or simply go ahead and enter your information in the registry.
Stuff you’ll need
You will want to get a few things ready before you begin.
- Your current pemphigus and pemphigoid prescription medication (the bottles work best if you have them)
- Know how long you have been taking the medicine
- You past pemphigus and pemphigoid prescription medication history to include reasons why you stopped taking it
Some Additional Things to Consider
You know…this might be a good time to consider a journal (if you haven’t started already). You can read how one family uses their Pemphigus / Pemphigoid Journal to stay on top of changes in routine, medication, traitement, and blistering in our Quarterly archives to read Capture the Learning: How Journaling Can Help In and Out of the Doctor’s Office.
If you have any questions, click the Ask a Question link and make sure to select REGISTRY for the Reason. We’ll be happy to assist you and get you started right away!