The Adult Congenital Heart Association (ACHA) is proud to announce its third round of research grants to fund four new projects across the United States. The total commitment for ACHA’s research program now totals $400,000 since 2019, which has funded 14 scientific research projects.
As the only national patient advocacy organization specifically funding adult congenital heart disease (ACHD) research, ACHA emphasizes the importance of partnership between patients, their families and the medical field. According to ACHA Medical Advisory Board Chair Arwa Saidi, MB, BCh, MEd, it is this collaborative partnership that will continue to improve long-term survival and quality of life in adult patients with congenital heart disease (CHD).
“Research has always brought about progress in medicine, and this has led to the great success in the survival and outcome of the children born with CHD,” Dr. Saidi said. “The awards highlight some of the important issues where questions remain, such as lifestyle concerns, patient-reported outcomes, and Fontan management.”
In addition to the three traditional research grants, this year ACHA is excited to introduce the inaugural Meil Family Foundation Research Award for Neurocognitive Studies.
“We are becoming increasingly more aware of neurocognitive issues, and that living with CHD often leads to related challenges for many individuals,” said ACHA President and CEO Mark Roeder. “The field is just starting to do organized research around this, and ACHA wants to take a leadership role by funding research in areas such as cognition, anxiety, stress, and more—as we have begun funding in prior rounds. Now, with designated funding, we will be able to ensure we continue to focus on these studies for many years to come.”
Roeder gives credit to Barry and Wendy Meil of the Meil Family Foundation, who in 2019 were the first funders to step up with a leadership gift when ACHA announced it would be funding emerging research. Through the years, they have continued to increase their investment. As the ACHA research program continues to grow, it remains an integral part of the organization’s five pillars, along with awareness, accreditation, advocacy, and education.
The following one-year ACHD early investigator grants, which will begin October 1, 2022, are jointly funded by ACHA, the Meil Family Foundation, the Dale Amorosia Heart Fund, and the Brad's Heart of a Jayhawk Research Fund:
- Impact of a Home-Based Healthy Lifestyle Program on Body Composition and Exercise Capacity in Adult Congenital Heart Disease Patients with Heart Failure, Tracey Thompson, MD, Salil Ginde, MD, Medical College of Wisconsin
- REHAB Fontan Failure: RCT of the Effects of cardiac reHABilitation versus Tadalafil Among Patients with Fontan Failure, Jonathan Menachem, MD, Daniel Clark, MD, MPH, Vanderbilt University
- Validating a Patient-Reported Outcomes Tool in Adults with Congenital Heart Disease, R. Thomas Collins II, MD, Alexander Sandhu, MD, Jennifer Woo, MD, Stanford University
The Meil Family Foundation Research Award for Neurocognitive Studies also will begin on October 1, 2022, and was awarded to:
- Exploring Mind Body Resilience and Coping/Cognitive Exercises-(EMBRACE): A Psychoeducational Intervention for Adult Congenital Heart Disease, a Randomized Control Trial, Vicki Freedenberg, PhD, RN, Children’s National Hospital
These four studies were chosen through a double-blind process with two teams of reviewers—one comprised of Medical Advisory Board members, including ACHD cardiologists and nurses, and the other of patients and family members across the country, including peer mentors, board members, fundraisers, and more.
“We received many excellent research proposals and critically reviewed each application based on its scientific merit and relevance to our patient population,” added Dr. Saidi. Scoring included areas such as significance and innovation, approach and methodology, and investigator track record and qualifications.
To learn more about ACHA’s research program and research projects, 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.