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University of South Florida

USF Health/Tampa General-based sarcoidosis program among inaugural group to launch national research alliance

The USF Health and Tampa General Hospital pulmonary and critical care medicine program is among the founding organizations in newly formed the Global Sarcoidosis Clinic Alliance launched in June by the Foundation for Sarcoidosis Research (FSR).

The FSR Global Sarcoidosis Clinic Alliance is a member program of clinics, hospitals, and individual providers committed to finding a cure and offering evidence-based, patient-centric care for those living with sarcoidosis.

“The new FSR Global Sarcoidosis Clinic Alliance can have worldwide impact on advancing sarcoidosis research and improving the lives of those with sarcoidosis through patient and clinician education, engagement, and support,” said Debabrata Bandyopadhyay MD, associate professor and director of clinical research in the Division of Pulmonary and Critical Care in the USF Health Morsani College of Medicine, and director of the Interstitial Lung Disease and Sarcoidosis Program in the Advanced Lung Disease & Transplant Center at Tampa General Hospital.

“We are thrilled to be a founding member of the newly launched FSR Global Sarcoidosis Clinic Alliance,” he said.

Sarcoidosis is an inflammatory disease of unknown cause characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body, affecting the lungs in about 90% of cases and typically impacting multiple organs. Despite increasing advances in research, sarcoidosis remains difficult to diagnose with limited treatment options and no known cure. African American women experience the highest incidence of sarcoidosis in the United States compared to any other group, and are more likely to experience chronic and severe symptoms and higher hospitalization rates than Caucasians and more than double that of African American men, and may have the least access to health care.

“FSR believes in the power of many to join forces for true game-changing results in sarcoidosis care and research. The FSR Global Sarcoidosis Clinic Alliance will ensure every patient in every community across the world has access to education, care, and support, leading to improved patient outcomes,” said Mary McGowan, FSR CEO.  “We are honored to already be collaborating with 22 esteemed founding members of this groundbreaking rare disease initiative which will lead to extraordinary results. The quality of life of approximately 1.2 million sarcoidosis patients impacted by sarcoidosis world-wide depends on a true global collaborative and that’s exactly what this Alliance is all about.”

In addition to expanding sarcoidosis research and patient care, the FSR Global Sarcoidosis Clinic Alliance members will benefit from innovative resources, sustainable programming, and tools to accelerate treatment, research, and the continuum of patient care.

The USF Health/TGH program is a recognized sarcoid clinic by the World Association for Sarcoidosis and Other Granulomatous Disorders (WASOG) and provides comprehensive sarcoid care and has established a multidisciplinary sarcoidosis team to manage multiorgan sarcoidosis. In addition to Dr. Bandyopadhyay, that team includes sarcoid coordinators Lisa Dichiara, RN, and Kelsey Easterlin, RN, sarcoid advanced practitioners Cassandra Marlow, ARNP, and Katherine Langlais, ARNP, and operations manager Patrick Pustay Jr., RN. Other multidisciplinary team members include cardiologists, neurologists, hepatologists, ENT specialists, and ophthalmologists.

The USF Health/TGH program has a dedicated sarcoidosis clinic, conducts sarcoidosis research and is developing a support group service to sarcoidosis patients, as well as collaborating with FSR on a community outreach campaign called African- American Women and Sarcoidosis No More.

Established in 2000, Foundation for Sarcoidosis Research (FSR) is the leading international non-profit organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients through research, education, and support. Since inception, FSR has fostered over $6 million in sarcoidosis-specific research efforts and has worked diligently to provide resources to thousands.