Cardiac Sarcoidosis Multicenter Prospective Cohort

Sarcoidosis is an inflammatory disease of unknown cause.The disease can be very serious if it affects the heart. Symptoms of Cardiac Sarcoidosis (CS) may be the first sign of sarcoidosis.The four main ways that CS can affect the heart are:(1)blockage of electrical conduction from the upper to the bottom heart chamber, (heart block),(2)very rapid heartbeats (arrhythmia) which can lead to sudden death (3)weakening of the heart muscle (heart failure) which can progress to needing a heart transplant. (4) Patients may have heart involvement but have no symptoms but still be at risk of life threatening rhythm problems (silent disease). It can be estimated that currently there are between 19,000 and 22,500 Canadians living with sarcoidosis of whom perhaps 25% have cardiac involvement. There is very little information on how to treat these patients and indeed whether any treatment helps. There is an urgent need for more research to guide doctors on best practices and to develop new treaments B.MAIN OBJECTIVES To follow clinical outcomes in patients with the various types of CS. C.METHODS This is a multi-center prospective cohort study. As such, it will recruit patients from 20 major hospitals in Canada. Our team will follow these patients for at least 3 years. D.MERITS OF THE PROJECT CS is difficult to identify and often missed, leaving patients at risk for sudden death. CS affects young patients, typically in their fourth or fifth decade of life. The impact of premature death in this age group is devastating, affecting patients and families. This study is key to prevent death in young patients with CS. This is the first study involving multiple centers in the world evaluating patients with CS and will start to answer major clinical questions.It will generate novel data about the impact of CS in affected individuals.This study will produce the highest quality information.