Research Fuels Progress

ACHA has invested more than $500,000 to 18 grants in our emerging research program since it launched in 2019.

ACHA Research Grant Applications Now Available

March 2024: We are excited to build upon our commitment to unlocking new discoveries for our patient population, and are thrilled to announce today that grant applications for ACHA’s 2024 Research Awards are now available!

ACHA’s 2024 research program will continue to accept applications for early investigation and pilot studies for all ACHD disciplines, the Meil Family Foundation Research Award for Neurocognitive Studies, and the Pulmonary Vascular Disease Research Award, funded by a corporate sponsorship from Johnson & Johnson.

Click here for more information and all grant applications.

ACHA research is possible because of our generous donors and corporate funders including the Meil Family Foundation, Johnson & Johnson, Anne Stapleton Reilly, Brad’s Heart of a Jayhawk Research Fund, Dale Amorosia Heart Fund, Heithoff Charitable Fund, Jim Wong Memorial Fund, Joseph E. Hebert, and Susan Timmins.

Announcing ACHA's Newest Grant Recipients

September 2023: Announcing the recipients of the fourth round of ACHA Research Grants! This year, we have awarded two ACHD early investigator grants, the brand new Pulmonary Vascular Disease Award (funded in part by Johnson & Johnson), and the Meil Family Foundation Research Award for Neurocognitive Studies. Click here for a news story and more on each grant, which were announced at our Virtual Research Symposium. You can learn more about all of our research grants below.

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.

Thank you to 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, 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.

ACHA Research Grants

2023:

ACHA Research Grant Awards

Pulmonary Vascular Disease Award, funded in part by Johnson & Johnson

Meil Family Foundation Research Award for Neurocognitive Studies

The recipients of this award are 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.

2022:

ACHA Research Grant Awards

Meil Family Foundation Research Award for Neurocognitive Studies

2021:

2019:

Click on the researchers' names below for a video to learn more about each project, and on the study title for more information:

ACHA Research Fund Donors

Thank you to the following donors for investing in ACHA’s Research Program. When you donate to ACHA’s Research Fund, your tax-deductible gift will help to advance research that may ultimately lead to better outcomes for patients living with congenital heart disease. Learn more and donate today.

  • Anne Stapleton Reilly
  • Brad's Heart of a Jayhawk Research Fund
  • Dale Amorosia Heart Fund
  • Diana J. Kalman
  • Heithoff Charitable Fund
  • Johnson & Johnson
  • Jim Wong Memorial Fund
  • Joseph E. Hebert
  • Laurie Rae Graham Bennett
  • Meil Family Foundation
  • Susan Timmins
  • Ted and Donna Wagner

Congenital Heart Initiative

The Heart Research Alliance, Children's National Hospital and University of California San Francisco, in conjunction with the Adult Congenital Heart Association, came together to fight for a better future for those living with congenital heart defects by creating the Congenital Heart Initiative, an adult congenital heart disease (ACHD) patient registry. This initiative will give researchers, health care providers and patients a deeper understanding of ACHD as a condition, informing future research projects and spurring innovation to improve patient outcomes and quality of life!

If you are a patient living with ACHD, consider enrolling in the registry! Learn more by clicking here.

ACHA wants our community to know how important research is in improving the quality of care and the quality of life for people with adult congenital heart disease. We work to inform patients and caregivers about open studies, to support research and to develop partnerships that advance the research agenda for ACHD.

You can help advance research in adult congenital heart disease by:

  1. Increasing awareness of ACHD
  2. Advocating for research funding for ACHD
  3. Educating yourself about the ACHD research agenda
  4. Participating in a clinical trial of study

Clinical Trials

There are clinical trials for all types of ACHD as well as studies that focus on the emotional and social issues that people with CHD face. Some require only that you fill out a survey form or participate in an interview; others involve actual treatment in a specific clinic or center.

ACHA lists several open studies on these pages. These are projects that we have co-sponsored or supported or were conducted by our partners. We encourage you to review these studies and considering participating in a trial if it is appropriate.

The best way to find a clinical trial is to talk to your ACHD specialist about finding a study that is appropriate for you. You can also find clinical trials for adult congenital heart disease by going to  www.clinicaltrials.gov. This is a very comprehensive website but some may find it difficult to use. Before searching this site, make sure you know your diagnosis and are aware of any issues or complications that you have. Every trial has very specific eligibility requirements. Talk to your doctor about your option to participate in a clinical trial. Print out anything you find on line for that discussion.

CenterWatch

www.CenterWatch.com, is a resource that helps both professionals and patients find industry-sponsored clinical trials.

By participating in a clinical trial, you can potentially help yourself and make a real contribution to the treatment and care of adults with congenital heart disease, today and tomorrow.

In Research

Studies Enrolling Subjects

Studies Enrolling Subjects

Discover where and how you can participate in Congenital Heart Disease studies, including the Quality of Life in Adults with Atrial Septal Defects study.

Learn about or enroll in ACHA sponsored research projects

ACHA Sponsored Research

These efforts address the great need for better information on the numbers and kinds of people affected by ACHD, and on the long-term outcomes of living with these heart conditions.

Join the Congenital Heart Initiative

Join the Congenital Heart Initiative

This initiative will give researchers, health care providers and patients a deeper understanding of adult congenital heart disease, inform future research projects, and spur...

Contact Congress Today

Demand better research, surveillance, and awareness of ACHD by calling on Congress to act now on the Congenital Heart Futures Reauthorization Act of 2024. Contact your elected officials today.