NEWS & EVENTS
HEART TO HEART NEWSLETTER DECEMBER 2013 ISSUE
CCF Awards $75,000 TowardPediatric Cardiomyopathy Registry Genetic Study
CCF has awarded an additional $75,000 to the Pediatric Cardiomyopathy Registry (PCMR) to assist with patient recruitment for a multi-center study, "Genotype-Phenotype Associations in Pediatric Cardiomyopathy."
The national study, involving 11 medical centers, will genetically profile pediatric cardiomyopathy patients to identify genetic variations that affect the development and progression of cardiomyopathy. To date, CCF has allocated $150,000 to the PCMR to supplement funding provided by the National Heart, Lung and Blood Institute. Tissue and blood samples from the Pediatric Cardiomyopathy Repository that CCF helped established in 2005 will be utilized for the study.
This study aims to understand the relationship of genetic causes to clinical course so that physicians are better able to identify patients who are at higher risk for poor outcomes. The goal is to enroll 700 children under the age of 18 with cardiomyopathy plus family members to understand why some gene positive family members do not present with disease symptoms while others with the same mutation do.
Participating centers will enroll cardiomyopathy patients and test family members through a blood sample or saliva swab. Participants will be followed for five years. More information on the study and patient enrollment criteria can be found at the National Institutes of Health clinicaltrials.gov site.
Participating medical centers include Cincinnati Children's Hospital Medical Center, Washington University School of Medicine, Children's Hospital of Philadelphia, Columbia University, Children's Hospital Boston, Ann & Robert H Lurie Children's Hospital of Chicago, Primary Children's Medical Center, Monroe Carell, Jr., Children's Hospital at Vanderbilt, Stollery Children's Hospital, University of Miami Miller School of Medicine/Jackson Memorial and Children's Hospital at Montefiore.