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.

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

Risk-Taking Behavior Among Adolescents with Congenital Heart Disease

What is the purpose of the project?

Adolescents with congenital heart disease (CHD) are living well into adulthood. The aim of this project is to describe risk-taking behaviors among adolescents with CHD and examine the association between impulsivity and risk-taking behavior. Survey data will be described using standard descriptive statistics. The predictive effect of impulsivity on risk-taking behavior will be compared across participant ages and school grades.

Who is eligible?

  • People with a CHD diagnosis between the ages of 13 and 19 years old
  • Enrolled in high school or home-schooled (grades 9, 10, 11 or 12)

What factors exclude eligibility:

There are a number of reasons someone might not be able to participate.

  • Known genetic syndrome or chromosomal abnormality
  • Schizoaffective disorder
  • Bipolar disorder
  • Major depressive disorder (clinical depression)
  • Post-traumatic stress disorder
  • Psychosis
  • Paranoia
  • Antisocial personality disorder
  • Borderline personality disorder
  • Inability to read or write in English
  • Unable to hear
  • Lack of internet access to complete the study.

What are the major risks and benefits of participation?

There is minimal risk to participants. The participant is anonymous.

Participants may experience a sense of contribution and may gain knowledge about impulsivity and sleep patterns related to CHD during adolescence.

Possible risks of being in this study include remembering risky behaviors as a result of completing the surveys. Participants can stop at any time, can skip any questions that make them uncomfortable, and are free to withdraw from the study at any time.

Participants who complete all of the surveys will receive a $20 Amazon e-card and a chance to win a $50 Amazon e-card.

What is the time commitment?

The survey should take about one hour to complete. Participants will be given an option to save their responses and exit the database after the completion of each survey.

How do people interested in joining the study get involved?

Individuals who meet the eligibility criteria should email the Principal Investigator at the email address below for the survey link and additional information.

Contact information
Leigh Ann DiFusco, MSN, RN, PCNS-BC
Doctoral Candidate, The University of Delaware School of Nursing
difuscol@udel.edu

Living with a Heart Condition: A Lifespan Approach

What is the purpose of the project?

The purpose of the study is to learn how surgeries and medications for heart disease affect the mental and physical health of those living with congenital heart disease.

Who is eligible?

Participants must be 18 years or older with a history of heart disease at any point in the lifespan to participate in this study.

What factors exclude eligibility?

Participants who are unable to complete the informed consent form and the survey on their own are excluded from this study.

What are the major risk and benefits of participation?

There is a minimal risk of feeling stress at recalling heart surgeries when completing a self-report measure on this topic. There are no other risks for this study. A counseling resource list will be provided to all participants in the study. Participants will not directly benefit from participating in this study (i.e., no payment). However, results from this study may inform ACHD healthcare.

What is the time commitment?

This is a one-time confidential survey that takes about 30 minutes to complete. Individuals can complete the survey online or they can have the survey sent to their home to be completed and returned in a self-addressed stamped envelope provided.

How do people interested in joining the study get involved?

Interested individuals should email Kim Shifren, Ph.D. at kshifren@towson.edu for information on the online survey link or how to receive the survey via regular mail.

Psychological Factors Related to Physical Activity in Adult Congenital Heart Disease

What is the purpose of the project?

The purpose of this study is to learn how knowledge, thoughts, and emotions about health are related to physical activity in adults with congenital heart disease.

Who is eligible?

Participants must be 18 years or older with a history of congenital heart disease to participate in this study.

What factors exclude eligibility?

Participants who are unable to complete the informed consent form on their own are excluded from this study.

What are the major risks and benefits of participation?

There is a minimal risk of loss of confidentiality or privacy through participation in this study.  Participants will not directly benefit from participating in this study (i.e., no payment). However, results from this study may inform ACHD healthcare.

What is the time commitment?

This is a one-time anonymous and confidential online survey that takes 20- 25 minutes to complete.

How do people interested in joining the study get involved?

Interested individuals should email Tyler Pendleton at tjp3n3@mail.umsl.edu

Survey of Patient and Family Opinions Regarding Acceptance of Hearts for Transplantation

What is the purpose of the project?

Heart transplant physicians are often faced with a critical decision to a) Accept an imperfect donor heart at an increased risk of post-transplant complications or mortality or b) Wait for a perfect donor with the risk of not receiving a heart and dying while waiting. Based on a recent survey of transplant provider practice, physicians often err on the side of declining marginal donors. Recent data from kidney transplant patients demonstrated that patients believed that getting a transplant was more important than overall transplant longevity. There are no existing data on the opinions of patients and family members of patients waiting for or receiving heart transplants regarding donor selection. The aim of this project is to survey patients and their family members regarding their preferences of accepting donor organs. Survey data will be described using standard descriptive statistics and responses compared across patient groups (i.e. family members vs patients, pre-transplant vs post-transplant)

Who is eligible?

Any adult Any patient or family member of a patient is eligible to participate if the patient:

1. Has had a heart transplant

2. Is listed for heart transplant

3. May need a heart transplant in the future (i.e. any adult with CHD)

What factors exclude eligibility?

Anyone less than 18 years of age is ineligible for inclusion in the study.

What are the major risks and benefits of participation?

There is minimal risk to participants. The participant is anonymous.

Participants will not directly benefit or receive payment for participating. It will, though, provide a voice to patients and families regarding donor acceptance.

What is the time commitment?

The survey should take 5 minutes to complete.

How do people interested in joining the study get involved?

Individuals who meet the eligibility criteria should email Justin Godown, MD at the email address below for the survey link and additional information.

Contact information
Justin Godown, MD
Assistant Professor, Pediatric Cardiology
Monroe Carell Jr. Children’s Hospital at Vanderbilt
justin.godown@vumc.org