Research Opportunities
For many families with heart defects, participating in research is a powerful and rewarding way to contribute to the congenital heart defect community. Working together, research scientists and participants can advance knowledge, promote better outcomes, and find new treatments. We invite you to explore the listed opportunities, and to share any we missed with CNPschedulingandquestions@childrens.harvard.edu
NON-AFFILIATION DISCLAIMER
The following information is provided from ClinicalTrials.gov, which is a website and online database of clinical research studies and information about their results that is maintained by the National Library of Medicine. Each study sponsor or investigator submits information about their study to ClinicalTrials.gov and is responsible for the safety, science, and accuracy of any study they list. Boston Children's Hospital does not endorse, does not sponsor, and is not affiliated with any specific study, study sponsor, or investigator, except where explicitly noted. All product and company names are the registered trademarks of their original owners. The use of any trade name or trademark is for identification and reference purposes only and does not imply any association with the trademark holder. Patients are encouraged to discuss any research opportunities with their medical care provider before enrolling.
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CHDs and Autism Spectrum Disorder
Boston, MA, USA. This study is exploring whether a person's genes can contribute both to CHDs and Autism Spectrum Disorder. For more information contact Zoe Frazier Zoe.Frazier@childrens.harvard.edu
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CHD Genetic Network Study
Boston, MA, USA. This multi-center study is gathering information from patients with CHDs in order to better understand the genetic causes of symptoms. For more information contact Eileen King. B2BProgram@cchmc.org
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Detecting Kidney Injury after Heart Surgery
Boston, MA, USA. This study is looking at better ways to detect kidney injuries in children after cardiac surgery. For more information contact Douglas Atkinson. Douglas.Atkinson@childrens.harvard.edu
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Non-Cardiac Surgeries in Patients with CHDs
Boston, MA; Los Angeles, CA; Washington, DC, USA. This multi-site study is collecting information about patients with CHDs undergoing non-cardiac procedures. For more information contact Viviane Nasr. 617-355-6225 or viviane.nasr@childrens.harvard.edu
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Visualizing Scar Tissue in Patients with CHDs
Boston, MA, USA. This study is looking for better ways to visualize scar tissue in the hearts of patients after cardiac surgery. For more information contact Daniel Castellanos. 6173557769 or daniel.castellanos@cardio.chboston.org
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Developmental Care for Hospitalized Infants
Boston, MA, USA. This multi-center study is exploring whether Developmental Care practices can improve the outcomes of hospitalized babies with CHDs. For more information contact Samantha Butler. 6173557483 or samantha.butler@childrens.harvard.edu
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Support for pregnant parents of babies with single ventricle
Cincinnati, OH; Los Angeles, CA; Randwick, New South Wales, Australia; Westmead, New South Wales, Australia. This study is examining a stress-reduction intervention for pregnant parents after their babies have been diagnosed with a single ventricle congenital heart defect. For more information contact Nadine Kasparian at 513-636-5575 or nadine.kasparian@cchmc.org.
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Pulmonary Valve Replacement and Tachycardia in ToF
Boston, MA, USA. This study is trying to understand whether replacement of the pulmonary valve through a catheter procedure could reduce the risk of sudden death from ventricular tachycardia in people with repaired tetralogy of Fallot. For more information contact Edward O'Leary. 617-355-7833 or edward.oleary@cardio.chboston.org
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Physical Activity and Cardiac Surgery
New York, New York, USA. This study explores how cardiac surgery affects kids' physical activity, and whether an intervention can help kids to become more active after surgery. For more information contact Lena Sun. 212-305-2413 or Lss4@cumc.columbia.edu.
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Measuring Fetal Heart Function
New South Wales, Australia; Tel Aviv, Israel; L'Aquila, Italy; Milan, Italy; Trieste, Italy; Mamoudzou, Mayotte; Krakow, Poland. This multisite study is exploring how heart function is measured in fetuses with CHDs. For more information contact Anna Erenbourg. 61423879866 or a.erenbourg@unsw.edu.au
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Transition Care for Teens with CHDs
Milan, Italy. This study aims to find the best way to support teens with CHDs as they move to adulthood. For more information contact Serena Flocco. +39 0252774940 or serena.flocco@grupposandonato.it.
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South of France CHD Genetic Registry
Marseille, France. This study will collect genetic data from patients with CHDs in order to better understand the genetic influence of CHDs in the South of France. For more information contact Caroline Ovaert. caroline.ovaert@ap-hm.fr
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Lung Volume Optimization after Biventricular Repair
Berlin, Germany. This study is examining whether a lung optimization procedure can help children after a biventricular repair surgery. For more information contact Jan Clausen. 00493045932800 or jan.clausen@posteo.de
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DNA Analysis of Patients with Genetic Syndromes and CHDs
Columbus, OH, USA. THis study will examine participants' DNA, in an effort to better understand the genetics of syndromes associated with CHDs. For more information contact Jade Hayden. 16143555648 or jade.hayden@nationwidechildrens.org
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Aging and CHDs
Ghent, Belgium; Leuven, Belgium. This study will follow people with CHDs across time, and aims to determine if the aging process is faster than typical in people with CHDs. For more information contact Philip Moons. 016/373315 or philip.moons@kuleuven.be.
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Circulation in People with Fontan Circulation
Leicestershire, UK. This study is focused on understanding the vascular system and circulation of people ages 16+ who have Fontan anatomy. For more information contact Rajendra Raghuraman. rpr4@la.ac.uk
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Registry of Healthy Adults to Compare with Adults with CHDs
Rochester, MN, USA. This study is gathering data from healthy adults that they can use to compare with data from adults with CHDs. For more information contact Alexander Egbe. (507) 293-2565 or Egbe.Alexander@mayo.edu
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Gender and Heart Failure in Adults with CHDs
Paris, France. This study is exploring whether men and women with CHDs and heart failure face different risks to their heart tissue. For more information contact Magalie Ladouceur. 0033608260618 or magalie.ladouceur@aphp.fr
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AI Screening for CHDs
Beijing, China (plus 16 other Chinese locations). This study is exploring whether AI can be used to detect heart murmurs and CHDs during screenings among children ages 1-18. For more information contact Kun Sun. 8621-25076045 or drsunkun@xinhuamed.com.cn
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Safety of Finerenone in Treating Left Ventricle Dysfunction
Boston, MA; Aurora, CO; Wilmington, DE; Gainesville, FL; Hollywood, FL; Atlanta, GA; Indianapolis, IN; Ann Arbor, MI, plus 23 other US and international locations. This study is examining the safetly of the medication Finerenone in treating left ventricle dysfunction in patients in heart failure. For more information contact (+)1-888-84 22937 or clinical-trials-contact@bayer.com
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Wearable Biosensors in CHDs
Virtual and available anywhere, based out of Cleveland, OH, USA. This study is looking at how people with CHDs are using wearable devices such as smart watches to monitor the body's function and health. Contact Aashoo Tandon for more information. 216.444.5437
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Lung Health and Exercise in Patients with Fontan Circulation
Ankara, Turkey. This study is exploring lung health and exercise fitness among patients with Fontan circulation. They are recruiting patients ages 8 and older. For more information contact Haluk Tekerlek. +905355915009 or haluktekerlek@gmail.com
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Quality of Life in Adults with CHDs
Ankara, Turkey. This study aims to describe the quality of life of adults living with CHDs. For more information contact Tugba Siyah. +905547027196 or tubasanli96@gmail.com
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Fetal Brain Growth and Newborn Development
Zurich, Switzerland. This study is exploring the connection between the grown of fetuses' brains, and their development as newborns. They are recruiting pregnant parents, newborns with CHDs, and healthy controls. For more information contact Walter Knirsch. +41442667617 or walter.knirsch@kispi.uzh.ch
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Mental Health Screening in Kids with CHDs
Copenhagen, Denmark. This study is using a mental health screener to try to identify undetected mental health concerns in kids and teens with CHDs. For more information contact Sara Lau Jensen. 004526192879 or sara.hirani.lau-jensen@regionh.dk
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MRI Screening Protocol for Heart Disease
Montreal, Quebec, Canada. This study is exploring the use of a quick MRI screener that could detect heart disease. They are recruiting people with and without heart disease. For more information contact Elizabeth Konidis. 514-934-1934 ext 37305 or elisavet.konidis@muhc.mcgill.ca
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Biomarkers of Diverse People with Heart Disease
London, Ontario, Canada. This study is collecting data representing racially- and ethnically-diverse people with heart diseases, including CHDs. For more information contact Mark Chandy. 5196612111 or Mark.chandy@lhsc.on.ca
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Italian Registry for Repaired Tetralogy of Fallot
Italy (multiple sites). This registry is collecting information about people ages 6+ with surgically-corrected Tetralogy of Fallot. For more information contact Francesco Bianco. +390715965316 or francesco.bianco@ospedialiriuniti.march.it
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Cardiovascular Imaging in Adults
Cleveland, OH, USA. This study is attempting to find better ways to use MRIs to make images of the heart. They are recruiting adults with heart disease and healthy controls. For more information contact Lily Chen. 216 636-5373 or circ@ccf.org
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Liver and Mycardial Fibrosis in Adults with Fontan
Innsbruck, Austria. This study is exploring a possible connection between inflammation and fibrosis in the liver and heart muscle of adults with Fontan circulation. For more information contact Maria-Miriam Michel.+436606862227 or miriam.michel@i-med.ac.at
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Bicuspid Aortic Valves: Treatment and Outcomes
Suzhou, China. This study is documenting the treatment and outcomes of patients with bicuspid aortic valves. For more information contact Ya Yang. +86 18911662958 or echoyangya99@163.com
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Cardiovascular Health Improvement Project
Ann Arbor, MI, USA. This project is collecting a biobank of data from people with and without a range of heart diseases. This biobank will allow for extensive research to better understand CHDs and other heart disease. For more information contact Lauren Humphrey-Stark. 7342324779 or ljeany@med.umich.edu
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Psychotic Disorder in 22q11 Deletion Syndrome
Lyon, France. This study is looking for early signs of an emerging psychotic disorder in children and teens with 22q11 Deletion Syndrome. For more information contact Caroline Demily. 0450915163 ext +33 or caroline.demily@ch-le-vinatier.fr
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Multisite Survery of Small Vulnerable Newborns
Shanghai, China. This study is looking into the developmental and medical challenges facing children who were identified as being small and/or vulnerable as infants. For more information contact Yongjun Zhang. +86-13651736760 or zhangyongjun@sjtu.edu.cn
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Lymphatic and Cardiovascular Systems in Turner Syndrome
Aarhus, Denmark. This study is looking for underlying causes of heart disease and lymphatic dysfunction in women with Turner Syndrome. For more information contact Line Balsby. +4520461203 or libals@clin.au.dk
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Improvement of Cardiac MRI Imaging
Bethesda, MD, USA. This study is aiming to improve MRI imaging of the heart, and is recruiting both people with heart disease and healthy controls. For more information contact Jennifer Henry. (301) 827-6720 or henryjl@nhlbi.nih.gov
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Genetics and Outcomes in People with RASopathies
Bethesda, MD, USA. This study is aiming to better understand the genetics and symptoms of people with RASopathies, including Noonan Syndrome and cardiofaciocutaneous syndrome. For more information contact Douglas Stewart. (240) 276-7238 or ncifamilystudyreferrals@mail.nih.gov
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Amino Acid Therapy for Kidney Health after Heart Surgery
Cincinnati, OH. This study is exploring whether an amino acid infusion after heart surgery could reduce the incidence of acute kidney injuries, and reduce the number of days children spend on a ventilator. For more information contact Kelli Krallman. 513-636-4837 or kelli.krallman@cchmc.org
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Home-Based Rehabilitation for Young Patients with CHDs
Bordeaux, France. This study is trialing a hybrid cardiac reconditioning program, including both home-based and clinic-based services. It aims to improve cardiovascular health for young people with CHDs. For more information contact Pascal Amedro. 5 57 65 61 09 ext 33 or pascal.amedro@chu-bordeaux.fr
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Brain Development in People with Williams Syndrome
Bethesda, MD, USA. This study is aiming to better understand the brains of people with Williams Syndrome, and how their brain development is connected with their thinking and learning. For more information contact Tiffany Nash. (240) 205-0333 or tiffany.nash@nih.gov
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High Energy Density Feeding for Infants with Heart Defects
Shanghai, China. This study is exploring the effects of high energy density enteral feeding in infants with heart defects, exploring how the feeding affects their physical and cognitive growth. For more information contact Xu Yulu. 8602164931532 or xuyulu05@163.com
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Identifying Necrotizing Enterocolitis in Babies with CHDs
London, England, UK. This study is looking for early and more accurate ways to identify necrotizing enterocolitis in babies with congenital heart defects (CHDs). For more information contact Graeme O'Connor. +447958543828 ext 5858 or graeme.o'connor@gosh.nhs.uk
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Predicting Postnatal Circulation in Fetuses with PA/CS-IVS
Madrid, Spain and Gothenburg, Sweden. This study aims to determine how prenatal imaging could be used to determine the postnatal circulation of fetuses with pulmonary atresia critical stenosis with intact ventricular septum. For more information contact Cecilia Villalain. +34913908310 or cecilia.villalain@salud.madrid.org.
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Mother's Bloodflow when Baby Has a CHD
Rome, Italy. This study will be exploring the bloodflow (hemodynamics) of mothers carrying fetuses with a heart defect, and will also explore a possible connection between CHDs and preeclampsia. For more information contact Silvia Salvi. (39 + 3397172786 or silvia.salvi@policlinicogemelli.it.
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Video Game to Teach Transition Skills to Teens with CHDs
Salt Lake City, Utah. This study is examining a video game intervention designed to teach teens with heart defects to manage their own healthcare. For more information contact Rebecca Delaney. 18012132557 or rebecca.delaney@hsc.utah.edu.
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Improving Outcomes for Latino/x Families with CHDs
Los Angeles, CA, USA. This study is exploring whether a Parent Navigator Program can improve outcomes for Latino/x families who have a child with a congenital heart defect. For more information contact Emma Salmon. 323-361-5103 or esalmon@chla.usc.edu.
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Post-Traumatic Stress in Adults with Congenital Heart Defect
Washington, DC; Lebanon, NH; Columbus, OH, USA. This study is looking at adults with congenital heart defects (CHDs), exploring their exposure to traumatic events, and symptoms of PTSD. For more information contact David Harrison. 603-650-5724 or david.j.harrison@hitchcock.org.
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Fitness Trial for Children with Fontan Circulation
Philadelphia, PA, USA. This study is examining the effectiveness of a fitness program for children with Fontan circulation. For more information contact Elizabeth Goldmuntz. 215-590-3354 or goldmuntz@chop.edu
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Maternal Mental Health and Cardiac Neurodevelopment
Paris, France. This study is exploring a possible connection between the mental health of a pregnant mother, and the later neurodevelopment of her child with a congenital heart defect. For more information contact Johanna Calderon. 330603830737 or johanna.calderon@inserm.fr
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Psychological Intervention after Prenatal Diagnosis of CHD
Cincinnati, OH, USA. This study is exploring the effects of a psychological intervention for parents after the prenatal diagnosis of a congenital heart defect. For more information contact Nadine Kasparian. 513-636-5575 or nadine.kasparian@cchmc.org
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Fontan Wellness Project Virtual Resilience Program
Ann Arbor, MI, USA. This study is hoping to improve the resilience of patients with Fontan circulation through a virtual intervention. For more information contact Blake Armstrong. 734-615-4899 or blar@umich.edu.
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Interstage Monitoring Using an Implantable Loop Recorder
Boston, MA, USA. This study is looking at the feasibility of using an implantable loop monitor to track the functioning of babies with single ventricles during interstage. For more information contact Audrey Dionne.617-355-0000 or audrey.dionne@cardio.chboston.org