Hypertrophic Cardiomyopathy (HCM) is the most common form of inherited heart disease, and can affect anyone regardless of age, race, gender, or ethnicity. There is a critical need to standardize the identification, assessment, referral, and treatment of HCM patients to ensure consistent, high-quality care. To address these gaps in HCM identification and treatment standardization, AHA has created a National HCM Registry powered by Get With The Guidelines® (GWTG) to support the development of recognition and certification programs for US sites.
QUICK HCM FACTS
- While 100,000 people in the US have been diagnosed with HCM, it is estimated that 1 in 500 people are living with HCM and many are unaware. Some estimates show that it can be as many as 1 in 200 people who are undiagnosed.
- Left untreated, HCM can lead to heart failure.
- Until recently, the only option for these patients was surgical intervention.
- With newer treatment options comes the need to highlight those US hospitals with best-practice models for HCM identification, treatment, and referral to care inclusive of all treatment options.
Ready to Enroll?
The registry focuses on granular data collection from centers that routinely treat patients with HCM. To participate in the registry, complete the information request form (link opens in new window)(link opens in new window)and an HCM Registry team member will be in touch.
For questions, please contact [email protected].
Benefits of Participation
The HCM Registry is a dynamic data collection tool that enables comprehensive tracking and reporting on a healthcare system’s performance in delivering evidence-based treatment for hypertrophic cardiomyopathy.
Key registry functions include:
- Robust Data Collection: Efficiently gather comprehensive data on HCM patients.
- Real-Time, Patient-Level Reporting: Eliminate delays in performance feedback with immediate access to insights.
- Dynamic Benchmarking: Compare performance in real-time by hospital size, region, and other relevant factors.
- Raw Data Downloads: Facilitate additional analysis with accessible raw data options.
Additional Information & Tools
Founding Sponsor
Bristol Myers Squibb is the Founding Sponsor of AHA's Hypertrophic Cardiomyopathy Registry, Recognition, and Certification Initiative.
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