The Johns Hopkins Scleroderma Center of Excellence

Fredrick M. Wigley, MD
Johns Hopkins University School of Medicine

Project Summary:

The goals of the Johns Hopkins Scleroderma Center are to sustain and enhance a specialized Scleroderma Center that provides and coordinates comprehensive medical care for patients with systemic sclerosis (scleroderma); to be a major resource and coordinating center for both clinical and basic science research; and to develop and administer educational programs for patients, professionals and trainees. The Center is involved in both clinical and basic research and has established a robust translational research program that uses patient information and materials for new discovery by linking our clinical Center with basic scientists in academics and industry. Currently, the Center has over a dozen active clinical studies which include investigations into novel therapies for scleroderma. The Center continues to be a critical component of NIH-supported interactive research both with basic scientists (e.g., Dr. Antony Rosen and Dr. Hal Dietz) and the Johns Hopkins Pulmonary Hypertension research program, directed by Dr. Paul Hassoun. The Center has established educational programs through a patient oriented newsletter, online materials on its Website, lectures locally and around the world and numerous publications in books and peer-reviewed journals.

Project Update:

The Scleroderma Center at Johns Hopkins University continues to provide outstanding comprehensive care for patients with scleroderma and perform new discovery through clinical and basic research programs. It has established effective training programs for physicians as well as educational programs for patients and the public. It has become one of the largest and most respected Centers of its kind. More than 200 new patients continue to be seen each year at the Center- patients with scleroderma, Raynaud's phenomenon, localized scleroderma, mixed connective tissue disease or diseases that mimic scleroderma. The Center now has more than 2,600 scleroderma patients in its clinical database. The four experienced physicians focus on scleroderma and related diseases and evaluate and manage seven to eight new scleroderma patients and over 50-60 return scleroderma patients each week. Each patient seen is asked to participate in their research mission. Comprehensive clinical and laboratory data, including cardiopulmonary testing, is collected and stored in its database for both cross-sectional and longitudinal studies. A blood bank including plasma, serum, DNA and RNA has been established with thousands of samples available for investigators.

What this project means for people with scleroderma:

The Center plays an important role in the daily care of patients with scleroderma. Its basic and translational research will provide new insights into the pathogenesis of the disease that can lead to new therapy and the reduction of the suffering caused by scleroderma. The Center's staff and physician experts play a major role in education and information about coping with and managing the disease.

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