CONGENITAL HEART DISEASE

This study tests a lifestyle program designed to help teens and young adults (ages 15-25) with congenital heart disease become more physically active. Participants will receive a Fitbit, a personalized exercise plan, and education on healthy living. The goal is to see if the prog…

This study tests whether a high-energy diet helps infants with congenital heart disease grow and develop their brains better after heart surgery. Researchers will compare high-energy versus standard nutrition in 160 babies aged 0-6 months. The goal is to see if the special diet i…

This study tests a special stent designed to keep a small heart vessel open in babies under 6 months old who have a congenital heart defect. The goal is to improve blood flow to the lungs and delay or avoid open-heart surgery. About 35 infants will receive the stent and be monito…

This study looks at 200 infants under 1 year old who had heart surgery for congenital heart disease. After their breathing tube is removed, they will get one of two standard breathing supports: High Flow Nasal Cannula or Non-Invasive Positive Pressure Ventilation. The goal is to …

This study tests whether a home-based digital exercise program can increase physical activity and fitness in children aged 10-17 with Fontan circulation, a heart condition. Participants will wear an activity tracker for 12 months and complete fitness tests. The goal is to see if …

This early-stage trial tests whether heart cells grown from a patient's own stem cells are safe to inject into people with severe congenital heart disease. About 50 participants will receive the cells or be in a control group. The main goal is to check for serious side effects wi…

This study tests a compact heart-lung machine called Cardiohelp in 50 children with severe heart failure. The device supports the heart for up to 30 days while kids recover or await a transplant. The trial also compares two blood thinners to see which causes fewer bleeding or clo…

This study tests whether the drug Entresto (sacubitril-valsartan) can improve heart structure and function in adults with congenital heart disease. 45 participants will take either Entresto or a placebo for 52 weeks. Researchers will measure heart changes, blood markers, and qual…

This study tests whether a machine learning algorithm can better detect critical congenital heart disease (CCHD) in newborns by combining standard oxygen saturation measurements with perfusion index data. Researchers will enroll up to 320 infants, including those with suspected o…

This study is developing a computer program that can analyze heart sounds recorded with a digital stethoscope to tell if a newborn's heart is healthy or not. Researchers will record heart sounds from 1,000 babies under 30 days old and use those recordings to train and test the pr…

This study is testing a new non-invasive vest that uses 128 electrodes to map the heart's electrical activity in people with congenital heart disease. The goal is to see if this method can accurately identify areas causing abnormal heart rhythms without needing invasive procedure…

This study tests a clinical decision support system (CDSS) that helps doctors decide when to remove breathing tubes from children after heart surgery. About 330 children under 12 who have been on a ventilator for at least 48 hours after surgery will take part. The system gives tw…

This study tests a methadone-based recovery plan to improve pain control and reduce opioid use in children after heart surgery. About 500 children aged 3 to 18 will be randomly assigned to either the new methadone plan or standard care. The goal is to see if the new approach lowe…

This study tests an online program called I-InTERACT-North that helps parents of children aged 3-9 with congenital heart disease improve their parenting skills and manage child behavior. About 382 families from SickKids in Ontario will take part. The goal is to see if the program…

This trial tests a home-based exercise bike linked to a video game, designed for kids aged 10-18 with repaired congenital heart disease. Participants will do high intensity interval training three times a week for 12 weeks. The goal is to see if this fun, telemedicine-supported p…

This study tests whether a nerve block called a parasternal plane block can better control pain during heart surgery in children aged 6 months to 7 years. The block is given after anesthesia and uses a numbing medicine (bupivacaine). Researchers will measure pain using a special …

This study tests a program called H-HOPE for babies born with birth defects who need surgery soon after birth. The program includes special care and support to help with feeding, growth, and brain development, while also improving parents' mental health. About 40 babies and their…

This study tests whether a 12-week home-based high intensity interval training program can improve exercise capacity in people aged 12 to 45 with a congenital heart defect that required a surgical connection between the right ventricle and pulmonary artery. Participants are rando…

This study looks at whether using a video laryngoscope (a camera-equipped scope) helps doctors place a breathing tube through the nose more successfully on the first try compared to a standard direct laryngoscope in infants under 1 year with congenital heart disease. About 180 in…

This study tests whether a Parent Navigator Program (PNP) helps Latino/x families of babies with congenital heart disease get connected to developmental follow-up services. Forty families will be randomly assigned to either receive support from a parent with lived experience or s…

This registry tracks 2,000 adults with congenital heart disease who are on the waiting list for a heart or heart-lung transplant. The goal is to understand why some patients get worse or die while waiting, while others improve enough to be removed from the list. By collecting dat…

This study looks at oxygen levels in the kidneys of premature babies born before 32 weeks who have a heart condition called patent ductus arteriosus (PDA). Researchers want to see how kidney oxygen relates to the severity of the heart condition and whether it can predict kidney i…

This study looks at 174 mothers whose babies were diagnosed with serious heart defects before birth. Researchers will track the mothers' mental health from the third trimester until the baby is one year old, and then test the babies' brain development. The goal is to understand i…

This study looks at why some adults who had the Fontan procedure as children develop serious liver scarring. Researchers will use blood tests, imaging, and liver biopsies to track changes and find early markers of disease. The goal is to better understand the process and pave the…

This study will use a new type of cardiac MRI to look at the heart's microscopic structure in 1,000 people—both healthy volunteers and those with various heart conditions. The goal is to see if this advanced imaging can detect early signs of heart damage better than standard test…

This registry is following 5,000 adults in Switzerland who were born with heart defects. The goal is to collect data on their long-term health, including complications and treatments. By tracking these patients over time, researchers hope to better understand the challenges they …

This study aims to develop and test new MRI methods for imaging the heart and blood vessels to improve diagnosis and management of heart disease. It will enroll up to 3,400 adults, including both patients with heart conditions and healthy volunteers. Participants will undergo MRI…

This study at Mayo Clinic enrolls 50 healthy adults to provide comparison data for the Adult Congenital Heart Disease Registry. Participants undergo an MRI and a test measuring blood pressure in the lungs during exercise. The goal is to better understand heart and lung function i…

This study uses small pieces of heart tissue removed during necessary surgery in children with congenital heart disease. Researchers want to understand how calcium controls heart cell contraction and how infant heart cells differ from adult ones. They also aim to improve lab-grow…

This study looks at ways to help teenagers and young adults with congenital heart disease (CHD) switch from pediatric to adult doctors. Researchers will compare education led by nurses versus doctors to see which works better. About 450 people with CHD, their supporters, and prov…

This study tests a new, lightweight ultrasound device called NeoDoppler that can be gently placed on a newborn's soft spot (fontanelle) to continuously measure blood flow in the brain. Researchers will enroll 180 preterm and full-term infants, including those with conditions like…

This observational study will analyze data from 3,000 people with complex congenital heart disease who have had or will have heart surgery in China. Researchers aim to identify key risk factors affecting recovery and build a quality control system to improve surgical care. Partic…

This study tests whether a personalized lung volume optimization maneuver can improve heart and lung function in children on ventilators. It includes two groups: children recovering from heart surgery and those with severe respiratory failure. Researchers will adjust ventilator p…

This study aims to find the genetic causes of congenital heart disease, the most common birth defect. Researchers will collect blood samples from 5,000 people with the condition and their family members. By analyzing their DNA, they hope to discover new genes that contribute to h…

This study looks at how growing up with a heart condition might increase the risk of post-traumatic stress disorder (PTSD). Researchers will survey 1,000 adults with congenital heart disease to find out which experiences—like past surgeries or bullying—are linked to PTSD. They wi…

This study uses special MRI scans to look at how the heart and muscles work together during exercise in children with heart disease or those who have had a heart transplant. Researchers want to learn more about what affects fitness in these kids. About 20 children aged 10 to 18 w…

This study examines whether special pacemakers can effectively treat a common type of fast heart rhythm (atrial tachycardia) in people born with heart defects. Researchers will review medical records from up to 300 patients over 10 years to see if the pacemaker reduces the need f…

This study is testing a new, non-invasive monitor (fetal magnetocardiography) to detect hidden heart problems in high-risk pregnancies that might lead to fetal death. Researchers will study 30 pregnant women with conditions like congenital heart disease or twin pregnancy. The goa…

This study looks at how well the heart works during exercise compared to at rest in people with congenital heart disease. Researchers will use a special test during a routine heart catheterization to measure blood flow and pressures. The goal is to find out if exercise can uncove…

This study will collect leftover blood samples from 10 newborns with severe heart defects who have surgery at Boston Children's Hospital. Researchers want to understand why these babies are more likely to develop dangerous blood clots after surgery. They will look at tiny molecul…

This study uses a safe, radiation-free device called electrical impedance tomography (EIT) to take pictures of the lungs in infants, children, and young adults up to age 25. Researchers will compare images from patients with chronic lung or heart conditions to healthy controls to…

This international registry is tracking 400 adults with congenital heart disease who are taking SGLT2 inhibitors, a type of diabetes medication that also benefits the heart. Researchers want to see how these drugs are being prescribed, how well they are tolerated, and whether the…

This study looks at whether pulse oximeters—the clips placed on fingers to measure oxygen levels—work equally well for children with different skin tones who have congenital heart disease. Researchers will enroll 92 children under 18 undergoing heart surgery and compare the oxime…

This study tests whether a wrist-worn device can help monitor pregnant women with congenital heart disease. Researchers will track heart rhythms and other data from 50 participants to see if the wearable can detect early signs of trouble. The goal is to improve care and reduce th…

This study aims to understand why people with tetralogy of Fallot and other congenital heart diseases experience shortness of breath, palpitations, and changes in heart structure. Researchers will use remote heart rhythm monitors and imaging to track 300 participants over two yea…

This study tests a digital app called Empower My Congenital Health (EmpowerMyCH) designed to help adults with congenital heart disease navigate the healthcare system. Researchers will enroll 1,000 participants to see if the app is easy to use, acceptable, and helps patients feel …

This study looks at leftover blood samples from 100 patients having heart surgery to see how certain immune cells (monocytes) change during the procedure. The goal is to understand links between inflammation and blood clotting risks. No new treatments are being tested; it is pure…

This study tests a new 3D ultrasound technique (Ventripoint) to see if it can accurately measure heart size and function in children and young adults born with a single ventricle. Researchers will compare the 3D ultrasound to standard echocardiograms and cardiac MRIs. The goal is…

This study looks at whether using a 3D-printed model of a child's heart helps surgeons plan a procedure to place a mechanical pump (VAD) in children with congenital heart disease and heart failure. About 36 children weighing over 3 kilograms will take part. The goal is to see if …

This study creates a registry for 500 people with congenital heart disease (CHD) and their caregivers. Participants share their medical history to help researchers understand the disease better and design future clinical trials. Unlike a typical registry, members will actively gu…

This study follows 150 fetuses diagnosed with a rare heart condition called pulmonary atresia with intact ventricular septum. Researchers will track their health before and after birth to develop a model that predicts which babies will need simpler versus more complex surgeries. …