In order to meet the rising demand of health care needs for nearly 1,000,000 adults with congenital heart disease (ACHD) in the US, multicenter research is greatly needed.
AARCC was specifically formed with the goal of establishing a vivacious network of ACHD centers in North America for the purposes of proposing, funding, and carrying out such research. AARCC exists as a research group to foster collaborative relationships between programs and investigators, to further and sustain research efforts, to include the goals of innovative investigations; advancing knowledge; and improving outcomes in Adult Congenital Heart Disease. The group first met in 2006 at the American College of Cardiology Scientific Sessions in Chicago. Bylaws were accepted in November, 2007.
AARCC’s focus is most directly served through actual multicenter research studies and protocols. It is envisioned that project-specific data collection will remain AARCC’s first priority, as protocol-driven data provides the most reliable means of ensuring data quality, uniformity of definitions, research standards, goal-oriented utilization of time and resources, results.
Improving care depends not only on the production of clinically relevant research, but also on the successful dissemination of research results to communities. This goal demands engaging these communities in research to identify deficiencies in care and patients’ needs, inform treatment, and improve long-term well-being
AARCC endorses and has worked towardsthe creation of an international registry. The organizational structure and resources required to implement such a registry in a timely fashion surpasses AARCC’s capabilities. Therefore, AARCC recognizes ACHA’s initiative and commitment towards establishing a national registry, and has an interest in partnering with ACHA to achieve this important objective. Towards the goal of facilitating multicenter research, a national registry would allow:
- Identification of eligible patients for project-specific data collection
- Assessment of feasibility of specific ideas/proposals (i.e. sample size and power estimates)
- Provision of preliminary data to include in protocols/grant applications
- Provision of information helpful in determining budget requirements