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.

Search CenterWatch

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.

Patient Centered Research Models to Diagnose and Treat Anxiety Disorders in Adult Congenital Heart Disease: A Pilot Pragmatic Clinical Trial

What is the purpose of the project?

The purpose of this project is to a) evaluate how common anxiety disorders and depression are in ACHD patients, b) determine if we can better predict which individuals are at highest risk for anxiety/ depression, and c) to study the efficacy of internet- based cognitive behavioral therapy treatments for mental health disorders in the ACHD population. 

Who is eligible?

Those over the age of 18 with a history of congenital heart disease.

What factors exclude eligibility?

Those without a history of congenital heart disease.

What are the major risks and benefits of participation?

There are no major risks associated with participation. There are minimal risks such as time spent, potential distress filling out assessment questions, or mild risk of unknown efficacy of treatment measure (though this would be mitigated by providing psychotherapy backup and referrals when needed). Participants in phase 1 will likely not directly benefit but will contribute to the largest and most detailed dataset delineating the prevalence of anxiety and its association with specific comorbidities in the ACHD population. Benefits of phase 2 participation include a potential reduction in anxiety symptoms.

What is the time commitment?

Phase 1: 10-20 minutes

Phase 2: 6-12 weeks

How do people interested in joining the study get involved?

Email: achdanxiety@cumc.columbia.edu

Website: www.chdanxiety.com

Contact information:

achdanxiety@cumc.columbia.edu

This study is made possible by ACHA's Research Program and is jointly funded by ACHA, the Meil Family Foundation, Project Heart, and the Dale Amorosia Heart Fund.

Click here to learn more! And, be sure to watch this interview with Dr. Matthew Lewis.

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.