LSU Scleroderma and Sarcoidosis

          Patient Care and Research Center

 

The Center offers comprehensive multi-disciplinary care for patients with Systemic Sclerosis (scleroderma).  This is includes combined specialty clinics with rheumatology, pulmonary and cardiology physicians for pulmonary fibrosis and for pulmonary hypertension.  The Center includes Specialty Care for patients with Systemic Sclerosis in dentistry, gastroenterology, physical / occupational therapy and wound care.

The Center is an official center of the EUSTAR Collaborative Registry (EULAR Scleroderma Trials and Research), International Scleroderma Network, Pulmonary Hypertension Assessment and Recognition of Outcomes in Scleroderma, Pulmonary Hypertension Association, Scleroderma Clinical Trials Consortium and the World Association of Sarcoidosis and other Granulomatous Disorders.

The Center maintains registries (collecting rooutine information that could researchers better understand disease and treatment) in both Systemic Sclerosis, Systemic Sclerosis related Pulmonary Hypertension and Sarcoidosis.

 

Early Diagnosis and Epidemiologic Assessment of Systemic Sclerosis in Louisiana and the Gulf Area

The Center is the force behind the implementation of active surveillance system to capture cases of systemic sclerosis in Louisiana and the Gulf Area. The goals are to investigate the prevalence of Systemic Sclerosis and the potential association of geographical and occupational clustering in Lousiana and the Gulf Area.

Scleroderma experts are convinced that early detection and appropriate treatment may impact disability and survival in Systemic Sclerosis. To this end - and in collaboration with the Scleroderma Foundation, the Pulmonary Hypertension Association and the Louisiana State Board of Medical Examiners, the center is embarking on a statewide campaign to increase awareness of the early signs of systemic sclerosis for the lay and medical communities.

For referral information please e-mail: RheumRareDiseases@lsuhsc.edu

 

Patient Advocacy Organizations

The Center's director believes it is essential that patients are informed about their disease and treatment options as well as maintain an alliance with patient advocacy organizations and support groups.

Coalitions for Pulmonary Fibrosis  www.coalitionforpf.org

EUSTAR www.eustar.org

Foundation for Sarcoidosis Research http://www.stopsarcoidosis.org/

International Scleroderma Network  www.sclero.org

The Pulmonary Fibrosis Association www.pulmonaryfibrosis.org

Pulmonary Hypertension Association www.phassociation.org

Scleroderma Foundation www.scleroderma.org