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Registry Advocacy | International Pemphigus Pemphigoid Foundation

Registry Advocacy

IPPF MAB member Dr. Ani Sinha discusses the importance of a disease registry

We propose that a national disease registry will be critical in the illumination of genetic risk factors and mechanisms of immune dysregulation in PV that can be expected to yield relevant insights into general mechanisms of autoimmunity, and facilitate the development of novel therapies for autoimmune diseases in general.

Autoimmune diseases are a major cause of disease burden in the US, contributing to significant morbidity and mortality in the population. In fact, autoimmune conditions represent the 3rd most prevalent group of diseases in the US after cardiovascular disease and cancer.

Autoimmune diseases as a group are estimated to affect 5-10 percent of the population. Over 80 different conditions are thought to be autoimmune in nature. For reasons that are not well understood, a preponderance of individuals affected with autoimmune diseases are female. Autoimmune diseases are among the top 10 leading causes of death in females < 64 years of age, and contribute to significant vocational disability in males and females.

Veröffentlicht unter Medical, P-P Patient Registry, Registry-based Research
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The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.

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