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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.

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

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

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

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

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

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

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.

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

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.

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

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.

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

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.

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.

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.

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

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

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

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.

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

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