Cardiac Sarcoidosis Registry

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Sarcoidosis is an inflammatory disease in which clumps of abnormal tissues, called granulomas, form in organs of the body. The lungs are most frequently affected, but granulomas can form in many other organs/tissues including the heart, liver, and kidneys. Cardiac Sarcoidosis can lead to arrhythmias, heart failure, sudden death and other heart problems. The natural history, effective treatments and outcomes of Cardiac Sarcoidosis are not well understood.

By increasing the amount of research into this condition, we hope to better identify risk factors for adverse events and factors contributing to improved treatments and outcomes. The Cardiac Sarcoidosis project is a multi-center initiative, that focuses on collecting retrospective and prospective health and imaging data, on patients with Cardiac Sarcoidosis, including demographics, comorbidities, diagnostic testing, treatments, and long-term outcomes.

MCORRP has been working with Dr. Frank Bogun and Dr. Thomas Crawford, the project’s Co-Principal Investigators, over the last few years to develop an online clinical registry to collect and store project data. Abstraction, entry and reporting began three years ago in 22 sites in the U.S. and 4 International sites and have enrolled 618 subjects. The consortium holds an annual meeting every year during the Heart Rhythm Society Scientific Sessions to collaborate on improvements to the database and care of patients with the disease. Several scientific abstracts regarding outcomes in patients with CSC have been presented at national meetings.

A Steering Committee has recently been established. The committee consists of national and international experts in cardiac sarcoidosis who are currently participating in the registry. The SC plans to meet quarterly with the goal of providing scientific oversight of the registry, determine research/publication priorities, and discuss opportunities for fundraising to support the registry.