Research Fuels Progress

ACHA Research Grants

2024:

ACHA Research Grant Award

• Understanding Peripartum Arrhythmia in Women with Congenital Heart Disease, Nicole Herrick, MD (Fellow) and Anushree Agarwal, MD (Board Certified ACHD Provider), University of California San Francisco

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

• Investigating the Genes Involved in Pulmonary Arterial Hypertension in Congenital Heart Disease, Continued, Kali Hopkins, MD (graduated ACHD fellowship in 2024) and Maria Trivieri, MD (Medical director of the Pulmonary Hypertension Program at Mount Sinai) 

Meil Family Foundation Research Award for Neurocognitive Studies

• Psychological trauma and post-traumatic stress disorder in adults with congenital heart disease: What is the scope of the problem? David Harrison, MD (graduated ACHD fellowship in 2023), Jamie Jackson, PhD (MAB Member), Anitha John, MD, PhD (Board Certified ACHD Provider and MAB member) 

2023:

ACHA Research Grant Awards

• 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

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

• 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

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

• REHAB Fontan Failure: RCT of the Effects of cardiac reHABilitation versus Tadalafil Among Patients with Fontan Failure, Jonathan Menachem, MD, and Daniel Clark, MD, MPH, Vanderbilt University, Nashville, TN
• 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, and Salil Ginde, MD, Medical College of Wisconsin, Milwaukee, WI
• Validating a Patient-Reported Outcomes Tool in Adults with Congenital Heart Disease, R. Thomas Collins II, MD, Alexander Sandhu, MD, and Jennifer Woo, MD, Stanford University, Stanford, CA

Meil Family Foundation Research Award for Neurocognitive Studies

• 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, Washington, D.C.

2021:

• Intrahepatic Transcriptomics Discriminate Advanced Fibrosis in Patients with the Fontan Circulation, Katia Bravo-Jaimes, MD, Ahmanson/UCLA Adult Congenital Heart Disease Center, Los Angeles, CA
• Renal Functional Reserve in Adults with a Fontan Circulation, Adam Lubert, MD, Adult Congenital Heart Disease Program at Cincinnati Children’s Hospital Medical Center, Cincinnati, OH
• Novel Remotely-Monitored Home-Based Cardiac Physical Activity Program Using Real-Time Data for Patients with Fontan Circulation, Prashob Porayette, MBBS, MS, University of Iowa Adult Congenital Heart Disease Program, Iowa City, IA
• Our Care Wishes – Adults with Congenital Heart Disease (OCW-ACHD), Lynda Tobin, CRNP, and Yuli Kim, MD, Philadelphia Adult Congenital Heart Center, Penn Medicine, Philadelphia, PA

2019:

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

• Dr. Nael Aldweib, Serial C-Reactive Protein Measurements to Predict Clinical Events in Adults with Congenital Heart Disease
• Dr. Valeria E. Duarte, Improving Pregnancy Outcomes in Women with Tetralogy of Fallot 
• Dr. Richard A. Krasuski, Peer Coaching Adaptive Self-Management Interventions for Young Adults with Congenital Heart Disease (CHASM IN ACHD)
• Dr. Matthew Lewis, Patient Centered Research Models to Diagnose and Treat Anxiety Disorders in Adult Congenital Heart Disease: A Pilot Pragmatic Clinical Trial 
• Dr. Carla P. Rodriguez-Monserrate, Cognitive Impairments in Adult CHD Patients 
• Dr. Jill Steiner, Strategies for the Successful Adaption of the PRISM (Promoting Resilience in Stress Management) Intervention to Promote Resilience for Patients with Adult Congenital Heart Disease 

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.