Char syndrome

This trial asks whether clamping the umbilical cord at 120 seconds after birth is better than clamping at 30 seconds for babies born with congenital heart disease. About 500 infants with a prenatal heart defect diagnosis will be randomly assigned to one of the two timings. Resear…

This study tests a special heart valve that can be adjusted to fit children as they grow. It involves 36 kids aged 1.5 to 16 years with congenital heart disease who need a new pulmonary valve. The valve is placed during surgery and can later be expanded without another operation.

This trial tests a 12-week neurocardiac rehabilitation program for children, adolescents, and young adults with moderate to complex congenital heart disease. The program combines home-based physical exercise, telehealth psychoeducation for parents and children, and computerized c…

This study tests whether a home monitoring program can reduce complications and deaths in infants who had heart surgery. Parents will measure their child's heart rate, oxygen levels, and weight at home and send the data daily via a secure app. The program includes alerts for worr…

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 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…

About 13 in 1,000 children are born with heart disease, but current tools struggle to measure how well the heart fills with blood. This study tests a new, ultrafast ultrasound technique that captures images at a very high rate to measure heart stiffness and blood flow. Researcher…

This trial tests whether adding nitric oxide gas to the heart-lung machine during surgery can prevent acute kidney injury in newborns with congenital heart defects. Up to 60% of these babies experience kidney damage after surgery, which can lead to serious complications. The stud…

Researchers are testing whether warming the wrist with a forced-air warmer helps doctors place arterial catheters on the first try in babies and toddlers having heart surgery. The trial includes 126 children aged 2 years or younger. Half receive local warming before the procedure…

Children having corrective heart surgery through a chest incision often need strong pain medicine. This trial compares two ultrasound-guided nerve blocks, a parasternal intercostal plane block and an erector spinae plane block, both using a mix of bupivacaine and lidocaine. All c…

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 whether live, group exercise sessions delivered via video chat can improve fitness in teens (ages 12-19) with certain types of congenital heart disease. 74 participants will either join the remote exercise program or receive standard exercise handouts. The main g…

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 …

People born with single-ventricle heart disease often have the Fontan operation, which reroutes blood flow but leaves them with reduced exercise capacity. Researchers at Hacettepe University are measuring lung function and breathing muscle strength alongside treadmill exercise te…

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 tests a new pulse oximeter worn on the abdomen, designed to measure oxygen levels in infants with congenital heart disease. Researchers compare its accuracy against standard fingertip monitors and direct blood measurements. The device also includes features to reduce e…

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 follows 450 babies born with serious heart defects to find early signs of developmental delays by 6 months of age. Researchers want to understand why over half of these children face learning, thinking, or behavior challenges later in life. The goal is to identify risk…

This study aims to collect DNA samples and medical information from 2,000 people with heterotaxy (a condition where organs are arranged abnormally) and related heart defects, along with their family members. Researchers hope to identify the genetic causes of these conditions, whi…

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 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 infants having heart surgery, where the thymus gland is often fully removed to access the heart. The thymus helps build the immune system early in life. Researchers want to see if removing only part of the thymus keeps the immune system stronger and reduces in…

This study follows 10,000 children with congenital heart disease who need surgery for non-heart issues. Researchers want to learn what complications occur and how hospitals use resources. The goal is to create better risk predictions and improve care for these patients.

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 looks at whether a structured physical activity program can improve thinking and learning in children who had heart surgery. Researchers will compare these children to those having other surgeries and healthy kids. The goal is to see if exercise helps with memory, atte…

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 looks at how changes in preoperative care affect anxiety in 100 children with congenital heart disease who need surgery or catheterization. Researchers will measure stress levels using questionnaires and scales, and also get feedback from parents and care teams. The go…

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 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 is looking at a new blood marker called sST2 to see if it can better detect heart failure in children after congenital heart surgery. Researchers will measure sST2 levels in 225 children under 18 during and after surgery, and at a follow-up 9-12 months later. They will…

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 …