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12 Major Medical Research Centers Partner with the Scleroderma Research Foundation to "CONQUER" Scleroderma - an Often Lethal Autoimmune Disease

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12 Major Medical Research Centers Partner with the Scleroderma Research Foundation to "CONQUER" Scleroderma - an Often Lethal Autoimmune Disease

PR Newswire

SAN FRANCISCO, July 26, 2018 /PRNewswire/ -- The Scleroderma Research Foundation (SRF) in collaboration with 12 of the nation's top medical research centers announces the launch of CONQUER: the first-ever national, longitudinal patient registry for those suffering from scleroderma.

Visit www.conquerssc.org

Scleroderma (or systemic sclerosis) is a chronic autoimmune disease and patients suffering from scleroderma can have a range of symptoms and complications.   The disease can affect vital organs such as the kidneys, lungs and heart and can also lead to disfiguring facial changes, weight loss, loss of hand function and other impairment that leads to a severe degradation of quality of life and death.  The cause remains undetermined and currently, there is no cure for scleroderma. Approximately 80,000 Americans are affected, with a multiple of that number affected worldwide.  

CONQUER will collect a detailed clinical dataset and blood from thousands of early-stage patients, each followed over several years.  This rich database and biorepository will be fundamental to advancing current research and to improving patient care -- with the aim of finding a cure for this chronic disease.

"We are thrilled by the significant support and innovation this collaboration will bring to our efforts to eradicate scleroderma," states Luke Evnin, Ph.D., Chairman of the SRF Board of Directors.  Dr. Evnin is a scleroderma patient and a biotech venture capitalist and has been integral in making CONQUER a reality.

The SRF which operates the most powerful scleroderma research program in the country is led by a committed Board – including comedian Bob Saget and celebrity chef Susan Feniger – of whom many have been personally affected by scleroderma.

"No one should have to suffer as my sister Gay did and I believe collecting robust patient data across the country is a key step to better understanding this horrific disease," Bob Saget stated in regard to his sister who passed away from complications of scleroderma in 1994.

The CONQUER consortium consists of leading scleroderma centers at the following institutions: Columbia University, George Washington University, Georgetown University, Hospital for Special Surgery, Johns Hopkins University, Mass General Hospital, Medical University of South Carolina, Northwestern University, Stanford University, University of Michigan, The University of Texas Health Science Center at Houston, and University of Utah.

CONQUER is made possible through the support of the Scleroderma Research Foundation and generous support of other co-sponsors including Boehringer Ingelheim and Actelion Pharmaceuticals US, Inc (one of the Janssen Pharmaceutical Companies of Johnson & Johnson).

Visit the CONQUER registry portal at www.srfcure.org or www.conquerssc.org  for more information.

The SRF Mission: To fund and facilitate the most promising, highest quality research aimed at improved therapies and, ultimately, a cure for scleroderma.

For more information, contact The Scleroderma Research Foundation directly at info@srfcure.org. Our office mailing address is: 220 Montgomery Street, Suite 484 San Francisco, CA 94104.

 

Visit srfcure.org

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SOURCE Scleroderma Research Foundation

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