Search for open clinical trials
At any given time, there are many clinical trials underway in many medical centers. These trials are open to enrollment until they recruit a specific number of participants. They all have eligibility requirements related to the study’s goals and the patient’s health status.
Note that some studies are focused on improving treatment of ACHD while others are about finding ways to improve the quality of life for people with ACHD.
For a complete list of open clinical trials, go to clinicaltrials.gov. Make sure you have exact information about your adult congenital heart condition before you begin your search. Click here for a search on Congenital Heart Disease.
CenterWatch is a source of clinical trials information for clinicians, researchers and patients.
ACHA lists some studies that are currently recruiting adults with congenital heart disease. We provide descriptions of these studies in patient-friendly language and update the list as often as possible.
Single Ventricle SOURCE
What is the purpose of this study?
SOURCE is a research study designed to help catalyze the discovery of targeted, transformative treatments and cures for single ventricle heart defects by building the largest genetic dataset of patients and families and making it available to researchers to better understand single ventricle heart defects and related complications. The goal of SOURCE is to understand the genetics and biology of single ventricle heart defects and the related complications in order to develop new, customized treatments and maybe even cures for patients.
Who is eligible?
This study is for anyone with a single ventricle heart defect living in the U.S. (all ages and stages of treatment, from pre-Fontan to post-transplant) and their immediate biological family members. That includes biological parents, siblings, and children of individuals with a single ventricle defect.
What are the major risks and benefits of participation?
There are no major risks to participating. Participant privacy is incredibly important to us and although we cannot say that there is zero risk of loss of privacy, SOURCE follows strict guidelines to ensure that participant information remains protected. None of your personal information that could identify you, such as your name and date of birth, will ever be shared with researchers or individuals outside of SOURCE study staff.
There are many benefits to participating in SOURCE. By generously donating their DNA and medical information, single ventricle patients and families have the opportunity to shape the future of the single ventricle community. By studying the genetics of large numbers of single ventricle patients and their family members, researchers will be able to discover the genetic causes of single ventricle heart defects as well as the many related complications that patients experience such as protein-losing enteropathy (PLE), plastic bronchitis, arrythmia, and heart failure. This will lead to the development of new treatments that are customized to each individual patient’s specific genetics and biology, and to a better understanding of their individual risk factors for developing certain problems like arrhythmia or heart failure. This research may even lead to cures for single ventricle heart defects.
What is the time commitment?
The time commitment per participant is very minimal as SOURCE is not a longitudinal research study. Participants will be asked to sign a consent form, provide a DNA sample (via cheek swab), and fill out a brief medical history survey. If you are a single ventricle patient, you will also be asked to sign a medical release form and provide a few cardiac-related medical records, including but not limited to their most recent cardiac clinic note and their latest ECHO report. Once these activities are completed, you are enrolled!
How do people interested in joining the study get involved?
Anyone who is interested in participating can log onto our website, www.svsource.org, to learn more and to complete enrollment into the study. All study activities can be performed directly from home, including collection of your cheek swab sample, and requires no hospital or lab visits. There is no cost, no travel, or time out of work or school required to participate!
The Impact of Child Congenital Heart Disease (CHD) on Parental Well-Being and the Role of Peer Support.
What is the purpose of this study?
This study aims to gain insight into the emotional and psychological experiences of parents caring for a child with CHD, with an emphasis on how peer support can influence coping strategies and parental resilience.
Who is eligible?
- Biological parent of a child (currently aged 6-12 years old) diagnosed with CHD prenatally or at birth.
- The parent must have a history of peer support involvement related to CHD, defined as giving or receiving support from other parents of children with CHD. This may occur through informal or formal avenues, including but not limited to online communities (e.g., Facebook groups, discussion forums), in-person or virtual support groups, or one-on-one interactions with other CHD parents.
What are the major risks and benefits of participation?
- Potential Benefits: Participation can help people feel heard, it is often a rewarding experience to help students or to help our field in general as it aims to improve our understanding of complex issues. It may be rewarding to feel you are doing something to help others by sharing your experiences that you have gone through. Participants will also receive a $20 Amazon gift card following the interview as a token of appreciation for participation.
- Potential Risks: There are risks to acknowledge. While we will do what we can to protect people’s privacy, we know that phone, email, and other forms of electronic communication include the risk of loss of privacy. Another form of risk is that being asked questions is sometimes uncomfortable and has the potential to be triggering. For that reason, you do not have to answer any questions you don’t want to, and you can also leave the study whenever you want to. This study, even with these safeguards, may not be right for you. We encourage you to do what is best for you.
What is the time commitment?
Time commitment will be a virtual Google Meet interview with Bailey Price that lasts approximately 60-90 minutes.
How do people interested in joining the study get involved?
You are encouraged to contact Bailey Price via email at bprice@wi.edu.
Exploring the relationship between advanced multimodal brain MRI phenotypes, genes, and cognitive outcome in adults with CHD
What is the purpose of this study?
The purpose of this study is to conduct a research study in the Cardiology Department at Boston Children’s Hospital for adult patients with d-transposition of the great arteries who underwent the arterial switch procedure in early infancy. The main purpose of this research study is to evaluate cognitive function and learning outcomes related to the heart condition and treatments and also how they relate to school and/or work performance, emotional health, and behavior. We will also be collecting saliva or blood for genetic study.
Who is eligible?
Patients between 24 to 35 year's old who were born with Dextro-transposition of the Great Arteries (d-TGA) and underwent the Arterial Switch Operation early in life to participate in this study.
What are the major risks and benefits of participation?
Participants may benefit by receiving detailed information about aspects of their neuropsychological status, identifying clinically important abnormalities from the brain MRI, and/or receive genetic results. The participant also may not experience any direct benefits from the study. The most important potential risks include: the time and inconvenience of completing the study assessments, some potential stress or anxiety when completing questionnaires, minor discomfort from the blood draw, and minor discomfort in the confined space of the MRI scanner.
What is the time commitment?
If the participant chooses to complete the Study Visit over the course of a single day, the consent, medical and family history, neuropsychological assessment (6-8 hours), blood draw, and MRI (1.5 hours), would all be completed in-person. This day would last 9-10 hours. If desired, the study visit can be completed over two days rather than one. For those outside of the metropolitan Boston area, we will provide transportation to Boston and lodging for up to 2 nights.
How do people interested in joining the study get involved?
Those who are interested in getting involved with the study can reach out to Kenzie via email at DTGA@childrens.harvard.edu or over the phone at 617-355-9116.
Adult From Heart to Sole
What is the purpose of this study?
To determine if certain types of congenital heart disease is associated with a specific "V" shape crease pattern across the ball of the foot.
Who is eligible?
Adults defined as those 18 years and older who have been diagnosed with congenital heart disease and can answer an online survey in English.
What are the major risks and benefits of participation?
This is a voluntary, anonymous online survey. It will not cost anything, and you won’t be paid. There are no major risks. There is also no direct benefit to participation, but if there is a link between congenital heart disease and foot crease pattern, this information could then be useful as part of newborn/child screening.
What is the time commitment?
The survey takes less than ten minutes to complete. After you complete the survey, your participation in the study will be done.
How do people interested in joining the study get involved?
If you want to learn more or to participate, click here to email Tami Jakubowski, DNP, CPNP-PC, CSN, or click here for the study.
Cerebrovascular Integrity in Individuals with a Fontan Circulation
What is the purpose of the project?
The purpose of the study is to better understand how single ventricular heart disease with Fontan procedure may affect delivery of oxygen to the brain as measured by magnetic resonance imaging (MRI).
Who is eligible?
Participants may be eligible if they are 13 years old and above, and have a single ventricle heart with a Fontan completion.
What factors exclude eligibility?
Participants must not have had a stroke, documented genetic abnormality, history of seizures after a surgery, or have needed specific types of advanced support (e.g., extracorporeal support). Participants must not have dental braces, claustrophobia, or pregnancy.
What are the major risks and benefits of participation?
Risk to participating in our study is potential bruising, bleeding from a blood draw. There is no direct clinical benefit in participating. We do share with our participants their brain MRI images, neurocognitive test results, and lab results.
What is the time commitment?
If you choose to participate in this study, you will be scheduled for a brain MRI scan, blood test, and neurocognitive test in Los Angeles, CA. Total duration: 2 visits lasting up to approximately 3 hours each visit. Both visits can also be completed in 1 day.
How do people interested in joining the study get involved?
Please contact Silvie Suriany at ssuriany@chla.usc.edu or 323-361-4783 or leave your contact info here to be conacted by the study team.
Congenital Heart Defects in Young Adults
What is the purpose of the project?
The overall goals of this project are to better understand the cognitive and psychosocial profile of young adults living with congenital heart disease and are at risk of developing neurodevelopmental outcomes to help improve diagnosis of these conditions in young adults with CHD.
Who is eligible?
Adults who meet one of the following criteria are eligible to be considered for this study:
- Between the ages of 18 and 24 years old
- Have had open heart surgery as an infant
- Have a cyanotic heart defect
- Had an extended hospital stay any time after birth
- Have any other genetic condition
- Participants must be able to legally consent for themselves to participate in this study
What factors exclude eligibility:
- Inability to consent themselves (not their own legal guardian)
What are the major risks and benefits of participation?
There are no major risks to participant in this study.
Participants will receive a gift card for completion of both the survey and an interview (if selected).
What is the time commitment?
The survey takes approximately 30 minutes and a follow up interview over Zoom takes approximately 1 hour.
How do people interested in joining the study get involved?
Individuals who meet the eligibility criteria should email the project coordinator, Sarah Ann Mathena, at the email address below for the survey link and additional information.
Contact information
Sarah Ann Mathena at smathena@peds.arizona.edu