Advocacy & Research
ACHD Registry Initiative
Proposed National Adult Congenital Heart Disease Registry
ACHA is committed to the development of a national ACHD registry to allow data from adults with Congenital Heart Defects around the country to be collected and studied. Currently, ACHA is working with the American College of Cardiology (ACC) and other interested partners to design and implement an ACHD registry. ACHA's goals in this effort are as follows:
Consent
Only ACHD patients who volunteer and give informed consent will be included.
Privacy
Rigorous systems will ensure that patient privacy is maintained and that data cannot be tied to specific individuals.
Participation and Representation
Participants will be recruited from many different care settings to ensure that data represents the full ACHD population.
Outreach
Specific outreach efforts will be made to ensure that those currently not in cardiac care are identified and included in the registry effort.
Patient Ownership and Leadership
ACHA and ACHD patients will maintain oversight and ownership of all registry activities and data. Research findings will be shared regularly with the ACHD community.
ACHA Lobby Days 2006 and 2007
A major goal of ACHA's Lobby Day 2006 was to ask Congress for funding and federal participation in a national Adult Congenital Heart Disease Registry. We were invited to submit report language on this topic, an important first step in achieving federal funding. For more information about Lobby Day 2006, ACHA's report language, Lobby Day 2007, and future advocacy opportunities, click here.