Studies Enrolling Subjects

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.

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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.

Heart of the Matter: An Anthropological Study of Congenital Heart Defects

What is the purpose of the project?
The project focuses on three main research questions:

  • How have people with CHD been treated growing up?
  • How have CHD patients and their families adapted to this medical diagnosis?
  • Given recent changes to disability laws, how have patients responded?

This project will give participants a chance to share their stories, and provide insight into the direction of CHD research and treatment.

Who is eligible?
Individuals who are 18 years or older and who read and write in English or Spanish may be eligible. Participants should be a CHD patient, Family member, medical professional, or advocate for people with CHD. Participants should live within the United States.

Who is sponsoring the study?
California State University, Fullerton: Division of Anthropology

What factors exclude eligibility?
Children under the age of 18. People living outside of the United States.

What are the major risks and benefits of participation?
There is minimal risk of the loss of confidentiality or privacy through your participation in this project. There may be no direct benefit to you for completing the survey other than sharing your stories, but others may benefit in the future from your participation.

What is the time commitment?
You will be asked to complete a 5-15 minute survey. There is no compensation, the study is confidential and voluntary.

How do people interested in joining the study get involved?
Interested individuals who meet eligibility criteria should email Anne Marie Whitehead M.A. Candidate annemarie011090@csu.fullerton.edu to find out more about the project.

Congenital Heart Survey To Recognize Outcomes, Needs and wellbeinG (CH STRONG)

What is the purpose of the project?
The goal of this project is to assess healthcare utilization, quality of life, and social and educational outcomes among young adults with CHD.

Who is eligible?
Individuals born between 1980 and 1997 in Arkansas, Arizona, or metro-Atlanta with a diagnosed CHD and who read and write in English or Spanish may be eligible.

What factors exclude eligibility?
Adults with some simple types of CHD or who were born outside of the project areas listed above.

What are the major risks and benefits of participation?
There is a potential minimal risk of the loss of confidentiality or privacy through your participation in this project. There may be no direct benefit to you for completing the survey, but others may benefit in the future from your participation.

What is the time commitment?
You will be asked to complete a 75-question survey. It should take about 20 minutes to complete the survey. You will receive a $5 gift card with the survey and $10 gift card upon completing the survey.

How do people interested in joining the study get involved?
Interested individuals who meet eligibility criteria should email info@CHSTRONG.org and may visit www.CHSTRONG.org to find out more about the project.

 

Quality of Life in Adults with Atrial Septal Defects

What is the purpose of the study?
The goal of this study is to explore the quality of life in adults newly diagnosed with an atrial septal defect (ASD). An ASD is a hole between the upper chambers of the heart.

Who is eligible?
Newly diagnosed adults (21 years of age or older) with an ASD that will be repaired in the cardiac catheterization lab who can speak, read and write in English.

What factors exclude eligibility?
 
Adults with any other type of congenital heart defect will be excluded.

What are the major risks and benefits of participation?
There is a potential minimal risk of the loss of confidentiality or privacy through your participation in this study. There may be no direct benefit to you for being in this study, but others may benefit in the future from your participation.

What is the time commitment?
You will be asked to complete five questionnaires at three different times, for a total of 12 questionnaires: Before ASD closure in the catheterization lab, one month after ASD closure, and six months post-ASD closure. It should take about 25-35 minutes to complete the questionnaires. You will receive $10 upon completion of pre questionnaires, $10 upon completion of 1 month questionnaires and $15 upon completion of 6 month questionnaires.

How do people interested in joining the study get involved?
Interested participants should email Mary Heitschmidt RN, APN, at Mary_Heitschmidt@rush.edu or call her at 312-942-9615.

Family Relational Experiences In the Course of Major Transitions with a Chronic Illness

What is the purpose of the study?
The purpose of this phenomenological qualitative study is to cultivate an understanding of how individuals with the diagnosis of CF or CHD and their parents communicate as they progress through adolescence managing a chronic illness, and move through the challenges of transitioning from childhood to adult care.

Who is eligible?
Both parents of an adult child aged 18 to 30 years living with Congenital Heart Disease, or an individual aged 18 to 30 years with Congenital Heart Disease, are invited to participate in a research study involving telling your story about treatment decisions that were made for the management of the disease, and also your experience with the transition process from child to adult health care.

What factors exclude eligibility?
Individuals with CHD who are under the age of 18 years or over the age of 30 years and their parents are not eligible to participate.

What are the major risks and benefits of participation?
There is a potential minimal risk of the loss of confidentiality or privacy through your participation in this study. There may be no direct benefit to you for being in this study, but others may benefit in the future from your participation.

What is the time commitment?
Participants will be asked to fill out a form with information about themselves and informed that the interview will last for 45 to 75 minutes. They will be expected to fill out a consent form prior to their participation in the study. Potential participants will also be informed on the consent form that a follow up interview might be conducted in the event that any participant responses were unclear. Once the consent forms and demographic information is obtained from all family members, interviews will be scheduled via face-to-face or web-based programs. All participants will be compensated for their time participating in this study with a $15.00 gift card for Amazon.com stores.

How do people interested in joining the study get involved?
Interested participants should email Juanita Sibayan by e-mail at eirejuan@aol.com or call her at (706)-405-9481.

Validation of an Adult Congenital Heart Disease (ACHD)-Specific Patient Reported Outcome Metric

What is the purpose of the study?

The goal of this study is to assess the capacity of a newly developed patient focused ACHD-specific questionnaire to accurately reflect how living with ACHD is currently effecting the lives of ACHD patients, and its sensitivity to predict clinical outcomes like getting worse, getting hospitalized, or dying.

Who is eligible?

Any adult (21 years of age or older) with ACHD receiving regular cardiology care at one of the institutions participating in the study which include: Boston Children’s Hospital/Brigham and Women’s Hospital in Boston MA, Massachusetts General Hospital in Boston MA, Montefiore Hospital in New York NY, National Children’s Hospital in Washington DC, Nationwide Children’s Hospital/Ohio State University Medical Center in Columbus OH or Baylor University Medical Center in Dallas TX.  Participants must be able to read and write in English.

What factors exclude eligibility?

All who are eligible based on the above criteria will be candidates for inclusion.

What are the major risks and benefits of participation?

There is a potential minimal risk of the loss of confidentiality or privacy through your participation in this study. There may be no direct benefit to you for being in this study, but others may benefit in the future from your participation.

What is the time commitment?

At your first visit, you will be asked to complete 5 questionnaires and to walk for 6 minutes to assess how far you are able to walk in that time. This all should take around 45 minutes total. The first visit can take place at the time of a regular appointment with your doctor. You will then need to return 3 months after your first visit to complete 6 more questionnaires. This visit can also take place at the time of a regular appointment with your doctor, however even if your doctor does not need to see you, it will be necessary for you to come in to complete the questionnaires. This visit should take around 30 minutes. Thereafter, you will complete 2 questionnaires at each regularly scheduled visit with your cardiologist over the next 1 to 2 years with no additional time commitment outside of your regular visit time.

How do people interested in joining the study get involved?

Interested participants should email Ari Cedars MD, at Ari.Cedars@BSWHealth.org.

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