ACHA supports ACHD research initiatives and advocates for the development of a national ACHD registry.
These efforts address the great need for better information on the numbers and kinds of people affected by ACHD, and on the long-term outcomes of living with these heart conditions. Right now, the severe shortage of research in these key areas is making it more difficult to assure that every ACHD patient has access to quality care.
Driving Progress in Congenital Heart Disease Research
Parent Knowledge Study
ACHA designed and coordinated this study to assess parental knowledge of their child’s lifelong healthcare needs. In partnership with the Adult Congenital Care Cardiac Associates, the study enrolled 419 parents with a goal of learning how better to educate parents about the need for lifelong cardiac care (LLCC).
The results of the study demonstrated that a substantial number of parents with moderate and complex CHD were not aware that their children required lifelong care and that it should be provided by an ACHD specialist. A high percentage of parents said their cardiology team had never addressed the LLCC issues, but the majority indicated an interest in learning more. The results were presented in 2010 at the American College of Cardiology Scientific Sessions and published in the official journal of the American Academy of Pediatrics in November 2011.
- To read the Scientific Session abstract, click here.
- To read the abstract of the journal article, “Parental Knowledge Regarding Lifelong Congenital Cardiac Care, click here.
- To see ACHA’s press release on the poster presented at the 2010 American College of Cardiology Scientific Sessions, click here.
The Research Empowerment in Adult Congenital Heart (REACH) Disease study is a collaborative effort with the Alliance for Adult Research in Congenital Cardiology. The grant, awarded by the National Institutes of Health in 2010 aimed to create IT, data sharing, education and oversight tools for a patient-driven, national adult CHD research network using a CHD specific data tool, CONGENERATE. ACHA established a national REACH resource center to provide a toolkit that assists any group interested in ACHD in making CONGENERATE available as a free download. The goal of this project was to determine if the ability to acquire automated electronic health records on a common, multicenter database can facilitate ACHD research by enabling analysis across treatment centers. The study, the first to report on a tailored, clinical research information system, sampled 2161 patients. Of this group, nearly two-thirds had moderate or severe CHD. The majority were female, Caucasian/non-Hispanics.
- Click here to see the abstract presented at the 22nd International Symposium on Adult Congenital Heart Disease (2012).
- Click here to see the abstract presented at the 2012 American College of Cardiology Scientific Sessions.
ACHA thanks the community for its support, insight and patience which made it possible to develop a tool that empowers ACHD research and information throughout the United States.
The REACH Project was supported by the National Heart, Lung and Blood Institute (award 1RC4HL104831).
Congenerate Health Initiative
The CONGENERATE Health Initiative (Congenital Evaluation, Reporting and Tracking Endeavor) is a tool that allows for ACHD specific data-sharing, program management and quality improvement using an electronic health record (EHR) customized for CHD patients and their health care providers. Using this tool, ACHD doctors can track the important health-related information, access electronic records on as needed basis and make it easier for ACHD researchers in different hospitals to pool information.
The Health Education and Access Research Trial in ACHD (Heart-ACHD) study was conducted in collaboration with the Alliance for Adult Research in Congenital Cardiology. It showed that ACHD patients often have lapses in their cardiac care after leaving the pediatric setting. These gaps in knowledge can be addressed with a simple educational intervention. Patients who went through this program also demonstrated increased understanding of how medical research is conducted and expressed interest in participating in research studies.
- To see the abstract of these study results published in the Journal of the American College of Cardiology click here.
- To see the abstract of these study results published in the International Journal of Cardiology click here.
- To see the abstract presented at the 2012 American College of Cardiology Scientific Sessions click here.
- To see the abstract presented at 2011 American Heart Association Scientific Sessions click here.
This project was supported by the National Heart, Lung and Blood Institute (award R03HL096135)