Are you looking for a way to contribute first-hand to a larger goal that may help you and other people living with pemphigus/pemphigoid (P/P) Many medical professionals agree that since P/P is rare, gathering accurate and complete information on the disease is especially important. The Health Management Program registry has been established in order to better understand the progression of P/P, as well as the different ways in which P/P affects people.
This information may ultimately contribute to earlier diagnosis, earlier intervention, and better disease management for you and other people living with pemphigus/pemphigoid.
Who can participate All people who have pemphigus/pemphigoid are eligible to participate, regardless of whether they are on treatment. Your participation is completely voluntary. A patient may decline to participate or withdraw consent at any time. All personal data is confidential.
What does the Pemphigus/Pemphigoid HMP do In addition to helping understand P/P, the registry is designed to help physicians understand the long-term effects of treatment. The registry is designed ultimately to provide the medical community with information about the P/P population around the world.
Data collected through the HMP, and reports published using that data, may be reported to regulatory authorities for a variety of purposes including applying for NIH funding, supporting clinical trials and improving patient care.
The P/P HMP registry is a program sponsored and administered by the IPPF and Centric Health Resources and is overseen by an independent group of physicians with experience in researching and treating people with P/P. This board of advisors helps maintain the scientific integrity of the P/P HMP.
Why should I participate When you volunteer to participate in the P/P registry, your medical information is pooled with other participants and is used to assist physicians in studying trends and addressing specific questions about treating P/P. In addition, the registry could be a resource for further research in clinical trials.This information may contribute to better care for you and other people living with P/P.
Will my information be kept private Information that you submit to the P/P registry will reference you by patient number and not by name. Information submitted to the P/P HMP will be maintained as confidential in accordance with applicable national privacy regulations and other state and local laws related to medical information.
For more information about the P/P HMP please contact Janet Segall, IPPF Director of Patient Services, 866-628-1298, jsegall@pemphigus.org
