Cardiac Sarcoidosis Consortium - International Registry

• Research type

  Research Study

• Full title

  Cardiac Sarcoidosis Consortium - International Registry

• IRAS ID

  139147

• Contact name

  Francis Murgatroyd

• Contact email

  francis.murgatroyd@nhs.net

• Sponsor organisation

  University of Michigan

• Research summary

  Cardiac sarcoidosis (CS) is a rare and poorly understood disease. The literature on cardiac sarcoidosis is largely limited to autopsy series, case reports and small single centre series. To date, no large scale clinical database exists to elucidate the diagnosis, natural history, cormorbid conditions and long term outcomes of this disease.

  The Cardiac Sarcoidosis Consortium (CSC) is an international, multicentre partnership, among physicians and allied professionals at major medical centers with the unifying purpose to learn more about cardiac sarcoidosis through collaborative research. This International registry is coordinated by the University of Michigan
  OBJECTIVES: To develop a prospective observational database for the study of cardiac sarcoidosis. Specific aims include observation of clinical manifestations of cardiac sarcoidosis including ventricular and supraventricular arrhythmias, congestive heart failure, valvular abnormalities, pericarditis, as well as extracardiac manifestations and overall mortality. Observation of current diagnostic modalities and treatment regimens will also be conducted.

  METHODS: A common data collection form will be developed to track consecutive patients evaluated within the Cardiovascular department over a ten year period. Information on patient demographics, diagnosis, extracardiac manifestations, clinical course and treatment modalities will be recorded.
  The data collected will be used for the development of a large scale cardiac sarcoidosis database, which will provide insight into the clinical characteristics, current treatment modalities and longterm clinical outcomes for this poorly understood disease.

• REC name

  South West - Cornwall & Plymouth Research Ethics Committee

• REC reference

  14/SW/1138

• Date of REC Opinion

  5 Nov 2014

• REC opinion

  Further Information Favourable Opinion