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.
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.
The Patient Voice: Services for Adults with Congenital Heart Disease (CHD)
What is the purpose of the project?
The purpose of this project: to improve the quality of health care services by identifying patients’ desired services and supports as they receive health care services in adult congenital heart disease (CHD) programs.
Who is eligible?
If you are at least 18 years old and have congenital heart disease (CHD).
What factors exclude eligibility?
You are not eligible if you are not able to read or speak in English.
What are the major risks and benefits of participation?
Risks to this project are minimal. We will ask you to complete a short survey that is anonymous. You will be given the opportunity to volunteer for an additional optional interview. The possible risks during the interview may be your own feelings of frustration or disappointment when talking about the services you have or have not received during adult CHD care. We will give you resources for managing stress. Your participation will help health care professionals better understand how they can improve services for adults with CHD in order to address holistic issues of everyday life that may be impacted by CHD.
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?
The anonymous survey will take less than 15 minutes. If you volunteer for the additional, optional interview, the interview will last 30-45 minutes.
How do people interested in joining the study get involved?
If you want to learn more or participate, you can click here or contact Debbie Waltermire, DrPH, OTR/L walterda@etown.edu.
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
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:
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.