The six projects focus on important topics surrounding adult congenital heart disease.
The Adult Congenital Heart Association (ACHA) has funded six research grants to advance the science of congenital heart disease (CHD) in adults. With the advent of this new ACHA program, the organization aims to improve the lives of CHD patients and future generations in partnership with medical professionals.
“If it were not for medical research and innovation, adult congenital heart disease (ACHD) would not exist as a field,” says Jamil Aboulhosn, MD, FACC, FSCAI, ACHA Medical Advisory Board Chair, noting that in the textbooks of the early 20th century, there was barely a mention of CHD. “There are so many questions that are still unasked and unanswered in this field and it is imperative that we do our part to move things forward, and that can only happen through research and innovation.”
ACHA is the only nonprofit in the country dedicated solely to the unique needs of the 1.4 million adults born with heart defects, the most common birth defect in the United States, diagnosed in one in 100 births. These adults are living longer today with one of the many varying types of congenital heart defects that range among simple, moderate, and complex—which was not a reality 20 years ago.
“ACHA funding research grants is a watershed moment for our organization,” says ACHA President & CEO Mark Roeder. “A key goal of our Vision 2025 plan for the future was moving into direct research funding. We are thrilled that with the help of our Medical Advisory Board, we were able to move forward in this direction and to announce our six research grants. We look forward to momentum building in ACHA’s research program and awarding an increasing number of grants in the years ahead.”
And as a parent of an adult CHD patient told ACHA, “Research is so important because it has improved and lengthened the lives of many CHD patients in the past and can continue to do even more into the future.”
The following two-year ACHD provider grants, jointly funded by ACHA and the Meil Family Foundation, were funded at $32,500 per year:
- Patient Centered Research Models to Diagnose and Treat Anxiety Disorders in Adult Congenital Heart Disease: A Pilot Pragmatic Clinical Trial, Matthew Lewis, MD, MPH, Schneeweiss Congenital Heart Program, Columbia University Medical Center, New York, NY
- Peer Coaching Adaptive Self-Management Interventions for Young Adults with Congenital Heart Disease (CHASM IN ACHD), Richard A. Krasuski, MD, Adult Congenital Heart Disease Center, Duke University, Durham, N.C.
- Improving Pregnancy Outcomes in Women with Tetralogy of Fallot, Valeria E. Duarte, M.D., Boston Adult Congenital Heart Disease Program, Boston Children’s Hospital
In addition, jointly funded by ACHA, Project Heart, and the Dale Amorosia Heart Fund, the following three fellows received one-year grants of $10,000 each:
- Strategies for the Successful Adaption of the PRISM (Promoting Resilience in Stress Management) Intervention to Promote Resilience for Patients with Adult Congenital Heart Disease, Jill M. Steiner, MD, MS, Division of Cardiology, University of Washington, Seattle
- Cognitive Impairments in Adult CHD Patients, Carla P. Rodriguez-Monserrate, MD, Boston Adult Congenital Heart Disease Program, Boston Children’s Hospital
- Serial C-Reactive Protein Measurements to Predict Clinical Events in Adults with Congenital Heart Disease, Nael Aldweib, MD, Boston Adult Congenital Heart Disease Program, Boston Children’s Hospital
These first projects will start July 1, 2019, and ACHA is eager to report on progress and outcomes, as well as continue to fund grants annually after this inaugural round.
“The ACHA research program will provide reliable funding for ACHD investigator and trainee initiated studies,” says Arwa Saidi, MB, BCh, MEd, ACHA Medical Advisory Board Vice Chair. “These studies can produce the early data needed to design future large multi-center studies and subsequently guide and improve ACHD patient care.”