Through funding from Bristol Myers Squibbs, the American Heart Association has launched a three-year initiative to improve and standardize care for patients with hypertrophic cardiomyopathy.
Despite being the most common form of inherited heart disease, estimates say 1 in 500 people living with hypertrophic cardiomyopathy do not know they have it. This underdiagnosis has led to inconsistent and fragmented systems of care, according to a Dec. 4 news release from the AHA.
As a part of the initiative, the association will develop a national hypertrophic cardiomyopathy registry to collect and analyze patient data and hospital performance. The initiative will also establish a certification program to set hypertrophic cardiomyopathy care standards, a learning collaborative and a care recognition program to track guideline adherence.
"A volunteer American Heart Association science advisory group will provide scientific expertise for development, maintenance and implementation of the registry, performance measures and recognition program," the release said.
The American College of Cardiology and the American Heart Association published updated guidelines for the management of hypertrophic cardiomyopathy May 8 in Circulation.
Fifteen sites will begin piloting data collection and care certification, with a goal of expanding the initiative to 60 sites.
Learn more about participating in the program here.