PEMPHIGUS-PEMPHIGOID PATIENT REGISTRY LAUNCHED.
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PEMPHIGUS-PEMPHIGOID PATIENT REGISTRY LAUNCHED
SACRAMENTO, California, USA (June 15, 2010) – The International Pemphigus & Pemphigoid Foundation (IPPF) has officially launched its Pemphigus-Pemphigoid Patient Registry. Pemphigus and pemphigoid (P-P) patients can now enter in specific illness and treatment/outcome information in an online registry tool that will provide researchers with valuable, hard to come by information about these rare diseases.
The registry was designed using SurveyGizmo.com, is HIPPA compliant, and the information is protected on their secure servers. The P-P Patient Registry has been approved by the United States Department of Health and Human Services’ Office for Human Research Protection’s Institutional Review Board (IRB). The IPPF has a goal of adding 1,000 respondents to the registry by the end of 2010. This goal will provide a substantial amount of illness and treatment information needed to support research and discovery, increase P-P education among medical professionals, and support its patient advocacy campaigns.
“On the foundation of the clinical information collected in patient databases and associated sample collections, we can systematically investigate disease mechanisms by relating clinical data to genetic, genomic, and proteomic disease factors,” said Dr. Animesh Sinha, Chief, N.V. Perricone Division of Dermatology and Cutaneous Sciences and Director, Center for Investigative Dermatology at Michigan State University. He believes that the P-P Registry “can be expected to yield relevant insights into general mechanisms of autoimmunity, and facilitate the development of novel therapies to help relieve the burden of human autoimmune disease.”
The registry is only for pemphigus and pemphigoid patients and takes approximately 10 minutes to complete. Patients interested in participating are encouraged to visit the IPPF’s registry page at http://www.pemphigus.org/wordpress/registry to learn more about the registry, download a guide to help them gather information on current and past medications, or participate.
About the International Pemphigus and Pemphigoid Foundation: The IPPF is the pre-eminent global organization dedicated to improving the quality of life of all people diagnosed with, or affected by, pemphigus or pemphigoid. The IPPF provides direct access to innovative and effective support that promotes the very best health care, improves quality of life, stimulates community resources, advocates for favorable government policies, accelerates the pace of scientific discovery and is the world’s best source of information on pemphigus and pemphigoid. We are compassionate in understanding, tireless in service, and relentless in advocating. One person at a time, we make a difference, building a community of care and hope. For more information, visit their website at www.pemphigus.org.