REACH Project

ACHA is excited to announce a major step toward a brighter future for congenital heart patients: the awarding of one million federal dollars to Research Empowerment in Adult Congenital Heart (REACH) Disease.

Click here to see the abstract presented at the 2012 American College of Cardiology Scientific Sessions.

REACH is a joint project of ACHA and the Alliance for Adult Research in Congenital Cardiology (AARCC). It will fund five national ACHD programs to pilot CONGENERATE - an electronic health record (EHR) designed just for ACHD patients. The goals of this tool are 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 will allow 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 is 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 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 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.

What do we need from you? First, your patience. ACHA’s long-promised new website will be further delayed as we plan for the new REACH IT needs. We know that ACHD patients and providers around the country need access to these kinds of Health-IT solutions as soon as possible, but we want to make sure this new system works, which will take many months. We hope to offer these new tools widely by early 2012. We are confident they will be worth the wait.

Second, we need your financial support. Believe it or not, this funding will cover only a small part of what it will take to get the envisioned system up and running. All REACH sites are donating substantial time and efforts, and ACHA needs to raise $50,000 in supplemental funds just to cover the first six months of REACH-related costs. If you support empowering the ACHD patient voice in research, please donate now.

If you have questions about REACH, or any other aspect of ACHA, please email me at amyv@achaheart.org. Together, we can reach ACHA’s vision for each person born with heart defects: a life unlimited by congenital heart disease.

Thanks for your support,

Amy Verstappen
President/CEO
Adult Congenital Heart Association