With the latest round of Adult Congenital Heart Association (ACHA) research grants, announced at our Virtual Research Symposium on September 23, 2023, we have now invested more than $500,000 over the past four years to fund 18 research investigations specifically focused on adult congenital heart disease (ACHD).
Since the launch of our emerging research program in 2019, ACHA has been the only national patient advocacy organization focusing solely on ACHD research. Through the research grants funded, we emphasize the importance of partnership between patients, their families and the medical field.
“Research is one of the noblest duties of the modern physician and provides the impetus to change the practice of medicine,” said ACHA Medical Advisory Board Chair Richard Krasuski, MD. “We have come so far in the field of ACHD based on the prior efforts of researchers. Success in this area requires creative thoughts, flexibility and perseverance. It also requires a source of funding. That is why I am so proud of ACHA, our ACHD community, and most importantly our donors for supporting these research projects.”
All research grant awardees were chosen through our double-blind process with two teams of reviewers—one comprised of Medical Advisory Board members, including ACHD cardiologists, nurse practitioners and nurses, and the other of patients and family members across the country, including peer mentors, board members, fundraisers, and more.
“We are thankful for the generosity of our research donors who allowed us to launch our research initiative and fund 18 investigations over the past four years,” said ACHA President/CEO Mark Roeder. “We are proud to be the only national patient advocacy organization solely dedicated to funding ACHD studies. And we are also proud that our review process includes both patient and medical reviewers to ensure that the patient voice is included in all our research funding decisions.”
Dr. Krasuski reports that the two teams of reviewers received several interesting research proposals covering a variety of topics this year, which were critically reviewed according to scientific merit and relevance to the ACHD population. Scoring included areas such as significance and innovation, approach and methodology, and investigator track record and qualifications.
The following one-year ACHD early investigator grants will begin in October 2023:
- In Silico Evaluation of a Dual-Impeller Single-Drive Fontan Circulation Assist Device, Christopher Broda, MD, Adult Congenital Heart Disease Program at Texas Children's Hospital/Baylor College of Medicine; and co-investigators Yaxin Wang, PhD, and Katharine Fraser, MPhys, PhD
- Leveraging Wearable Technologies for Arrhythmia Detection in Adults with Congenital Heart Disease – The ACHD Apple Watch Study, Brynn Connor, MD, ACHD Fellow, ACHD Program at Stanford University and Scott Ceresnak, MD, Director of Pediatric Electrophysiology, Stanford University
In addition to the two traditional research grants, the brand new Pulmonary Vascular Disease Award, funded in part by Janssen Pharmaceutical Companies of Johnson & Johnson, will also begin in October 2023. This grant was awarded to:
- Investigating the Genes Involved in Pulmonary Arterial Hypertension in Congenital Heart Disease, Kali Hopkins, MD, Adult Congenital Heart Disease Fellow with the ACHD Program at Mount Sinai and Maria Giovanna Trivieri, MD, PhD, Director of the Pulmonary Hypertension Program at Icahn School of Medicine at Mount Sinai
Finally, the Meil Family Foundation Research Award for Neurocognitive Studies was awarded to Adam R. Cassidy, PhD, LP, ABPP (Mayo Clinic), and Michelle Gurvitz, MD, MS (Boston Children’s Hospital/Brigham and Women’s Hospital). ACHA will work with Drs. Cassidy and Gurvitz, along with leading experts from the Cardiac Neurodevelopmental Outcome Collaborative (CNOC), ACHD providers, patients, and family members, to convene a conference in early 2024. The goals of this conference will be to identify critical gaps in knowledge; to propose an agenda for the next decade of neuropsychological, neurocognitive, psychosocial research focusing on adults with CHD; and to develop recommendations for the neuropsychological and psychosocial evaluation and management of adults with CHD. This will be the first conference of its kind to identify research and clinical priorities to optimize neuropsychological and psychosocial outcomes for adults with CHD.
“With the core of ACHA’s program in traditional research grant funding, as well as the continual additions of new focus areas for ACHD research as the program grows, we look forward to the results and impact of our current funded studies—and with the support of the entire ACHD community, we can’t wait to see where the future takes us,” said Roeder. “A special thanks goes to the Meil Family Foundation for allowing us to continue to increase our research focus on neurodevelopmental issues, and to Janssen Pharmaceutical Companies of Johnson & Johnson for expanding its longstanding partnership with ACHA by adding research to the list of mission activities they support for the ACHD community.”
ACHA would also like to thank the following donors for their contributions in support of our Research Fund: Anne Stapleton Reilly, Brad's Heart of a Jayhawk Research Fund, the Dale Amorosia Heart Fund, Diana J. Kalman, Janssen Pharmaceutical Companies of Johnson & Johnson, the Jim Wong Memorial Fund, Laurie Rae Graham Bennett, the Meil Family Foundation, the Robby Klaber Research Fund, Susan Timmins, and Ted and Donna Wagner.
To learn more about ACHA’s research program and research projects, as well as how to contribute to the ACHA Research Fund, click here.
ACHA is the only nonprofit in the country dedicated solely to the unique needs of nearly 2 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.