Discussion Forum
A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.

Research Empowerment in Adult Congenital

Heart (REACH) Disease Project

In 2010, ACHA was excited to announce a major step toward a brighter future for congenital heart patients: the awarding of one million federal dollars to the REACH project.

REACH was a joint project of ACHA and the Alliance for Adult Research in Congenital Cardiology (AARCC). It funded five national ACHD programs to pilot CONGENERATE - an electronic health record (EHR) designed just for ACHD patients. The goals of this tool were to help ACHD doctors track the information most important to keep their special patients healthy, make possible electronic access to records wherever and whenever needed, and to make it easier for ACHD researchers in different hospitals to pool information. With appropriate permission and oversight, this project allowed large groups of U.S. ACHD patients to be available for study. Outcomes data, such as death and disability rates, can also be tracked. The National Heart Lung and Blood Institute awarded the funding for this project through the American Recovery and Reinvestment Act.

The vision of REACH was to empower ACHD research and information throughout the United States. But first, it needs to work well in a small set of centers. We are deeply grateful to the five AARCC hospitals who volunteered to participate (Oregon Health Sciences University, Nationwide Children's Hospital, Cincinnati Children’s Hospital Medical Center, Children’s Hospital Boston/Brigham and Women’s Hospital, and Children’s Hospital of Wisconsin), and to OHSU-based Primary Investigator Dr. David Sahn and former AARCC Chair Dr. Craig Broberg for their leadership. Most importantly, REACH could not have happened without the international vision, leadership, and generosity of the Quebec-based CONGENERATE team of Dr. Ariane Marelli, Dr. Paul Khairy, and Dr. Andrew Grant.

So what is ACHA’s role in this project? The motto of community-based research is, “Nothing About Me Without Me.” As an NIH-designated Community Research Partner, it is our job to ensure that ACHD patients are true partners in solving the problems we face every day. ACHA will be training patient research leaders to serve on local and national oversight groups, and will run a variety of activities to help ACHD patients become more informed and engaged in research. We will keep our member needs front and center in the design of these new health IT solutions.

You can learn more about the REACH project, dataset results and find answers to frequently asked questions about the CONGENERATE software by visiting all of the project pages.