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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.

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.

Wearables in CHD Survey/Study

What is the purpose of this study?

The purpose of this study is to understand patients’ use and experience with wearable biosensors. A wearable health care device (“wearable”) is a portable electronic device that uses sensors on the human body. They can provide real-time information about the body’s functioning and health status. About 30% of adults in the United States use wearable health care devices. However, little is known about how wearables are being used by those affected by congenital heart disease. The purpose of this study is to understand this population’s experience with and attitudes towards wearable biosensors.

Who is eligible?

You must be either:

  • A patient at least 13 years-old with congenital heart disease, OR
  • A parent of a patient with congenital heart disease

You are not eligible if you are not able to read or speak in English, or if your congenital heart disease has not been an active issue since 2015.

What are the major risks and benefits of participation?

Participation carries minimal risk. The major risk is loss of confidentiality. However, we will only ask you to complete a short survey that is anonymous. We do not collect any identifying information. Some of the questions may make you feel uncomfortable. You may refuse to answer any of the questions. You may stop your participation in this study at any time. There is no direct benefit to you of participating in this research study. The knowledge gained may benefit other patients, society, or science. Your input may also help inform the future design and use of wearable biosensors for patients of all ages with congenital heart disease.

What is the time commitment?                                               

Your participation in the research involves completion of the survey. This takes about 30 minutes.

How do people interested in joining the study get involved?

If you want to participate, click here.

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

Warfarin/Coumadin Therapy and its Social, Psychological, and Emotional Influences on Identity, Behavior, and Lifestyle in Adults

What is the purpose of the project?

The purpose of this study is to understand how individuals are socially, psychologically, and emotionally impacted by taking the anticoagulant warfarin (Coumadin/Jantoven). This research explores how consuming warfarin may influence adults' identity, behavior, and lifestyle.

Who is eligible?

Individuals 18 years or older who meet one of the following criteria are eligible to be considered for this study:

  • Currently taking warfarin (Coumadin/Jantoven) for at least 3 months
  • Healthcare provider who works in warfarin-managing roles (includes but is not limited to pharmacists, physicians, nurses, and nurse practitioners)

Please contact researcher if you have taken warfarin for 3 months or longer in the past and are interested in the study.

What factors exclude eligibility?

Individuals younger than 18 are not eligible. Individuals on warfarin for significantly less than 3 three months are not qualified to participate.

What are the major risks and benefits of participation?

Participation carries minimal risk. Preventive measures will be taken to protect confidentiality of participants’ identifiable information. Also, as with any survey, some questions may evoke an emotional response. Participants can skip questions or withdraw participation at any time.

There are no direct benefits to participants. However, this study may help others in the future by enhancing understanding of experiences with warfarin. We hope this information may facilitate consideration of patient needs and more efficient warfarin-care protocols.

What is the time commitment?

Participants will be interviewed in a 60–90-minute session either in-person, via video conference, or by phone call.

How do people interested in joining the study get involved?

Click here to join the study. Once the interest form is completed, participants will be contacted to answer questions and/or schedule an interview.

Contact Information:
Julia Htoon
htoonjulia@mail.fresnostate.edu
(559) 373-0057

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.

Emerging Adult and Parent Contributions to Dyadic Management of Congenital Heart Disease

What is the purpose of the project?

We hope to better understand the experience of managing congenital heart disease from the perspective of emerging adults and their parents. We hope this information will better enable healthcare providers to foster self-management and the ability to navigate healthcare systems.

Who is eligible?

Criteria for participation include: (1) being 18-29 years of age; (2) having congenital heart disease with cardiac surgery <1 year of age; (3) being in active care by a cardiology specialist; (4) not being currently hospitalized; (5) having a parent willing to participate also. More details are presented when you click the link to complete the survey.

What are the major risks and benefits of participation?

Risks or discomforts from this research are very unlikely. Should you experience distress, the investigators will be able to provide resources that can help support you. There is also a minimal risk of a breach of privacy while you are answering the survey questions.

What is the time commitment?

The emerging adult and one parent will each individually complete a 30-minute online survey.

How do people interested in joining the study get involved?

Click here or use the QR code below. Once you complete the survey, a parent survey link will be sent to an email you provide.



Contact information:

Amy Delaney, MSN, RN, CPNP
PhD candidate, Boston College Connell School of Nursing
delaneam@bc.edu
617-990-7618

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.

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.