PEMPHIGUS-PEMPHIGOID PATIENT REGISTRY LAUNCHED.
2701 코 티 지는 방법 #16
PEMPHIGUS-PEMPHIGOID PATIENT REGISTRY LAUNCHED
SACRAMENTO, California, USA (June 15, 2010) – 국제 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: IPPF은 저명한 글로벌 조직으로 진단 하는 모든 사람들의 삶의 질 향상에 전념된, 또는 의해 영향을, pemphigus 또는 pemphigoid. IPPF 제일 건강 관리를 촉진 하는 혁신적이 고 효과적인 지원 직접 액세스 제공, 삶의 질 향상, 자극 하는 커뮤니티 리소스, 유리한 정부 정책에 대 한 옹호, 과학적 발견의 속도 가속화 하 고 pemphigus 및 pemphigoid에 대 한 정보의 세계에서 최고의 소스. 우리는 이해에 동정, 서비스에 지칠 줄 모르는, 옹호에 잔인 하 고. 한 번에 한 사람, 우리가 차이 만들, 배려와 희망의 커뮤니티 구축. For more information, visit their website at www.pemphigus.org.