Capillary malformation

This trial tests whether a nasal spray containing bevacizumab, a drug typically used for cancer, can reduce frequent nosebleeds in people with hereditary hemorrhagic telangiectasia (HHT). The study enrolls 20 adults who have at least 10 nosebleeds per month. The goal is to see if…

This study follows 62 adults with hereditary hemorrhagic telangiectasia (HHT) who previously took pomalidomide in a clinical trial. Researchers want to see if the drug safely reduces nosebleed severity and the need for iron or blood transfusions over time. Participants take pomal…

This small pilot study tested the safety and effectiveness of the oral drug sirolimus for reducing nosebleeds in people with hereditary hemorrhagic telangiectasia (HHT). Ten adults with moderate to severe nosebleeds took 2 mg of sirolimus daily for 3 months. Researchers tracked b…

This phase 2 trial tested the drug sirolimus (rapamycin) in 61 children and young adults with complicated vascular anomalies—abnormal blood vessel growths that can cause pain, bleeding, or organ problems. The goal was to see if sirolimus could safely shrink these anomalies and im…

This study tested a drug called bevacizumab in 25 adults with hereditary hemorrhagic telangiectasia (HHT) who had severe liver issues and high heart output. The goal was to see if the drug could improve heart function and reduce the need for a liver transplant, which requires lif…

This study tested a new ultra-low-dose chest CT technique in 3 children (ages 1-17) with hereditary hemorrhagic telangiectasia (HHT) to see if it could detect abnormal blood vessels in the lungs (PAVMs) using much less radiation than standard CT. The goal was to find the lowest p…

This study tested whether an ultra-low dose chest CT scan can find lung blood vessel malformations in people with hereditary hemorrhagic telangiectasia (HHT) as well as the standard low-dose CT scan, but with much less radiation. 45 HHT patients received both scans, and radiologi…

This study looked at two different ways to use light therapy (photodynamic therapy) for treating port-wine stains—a type of birthmark—in 33 children aged 3 to 12. One group got a lower-power light for a longer time, and the other got a higher-power light for a shorter time. Both …

This study looked at over 2,200 people with hereditary hemorrhagic telangiectasia (HHT), a rare condition that causes abnormal blood vessels. The goal was to find out what makes some people with HHT more likely to have a brain bleed. Researchers collected health information, bloo…

This study followed 150 children aged 2 to 12 who have a port wine stain on a leg. Researchers tracked how the stain changes as the child grows, and whether it leads to problems like blood vessel issues or bone growth differences. The goal was to learn more about the condition an…

This completed pilot study looked at 47 adults with hereditary hemorrhagic telangiectasia (HHT) who also have liver involvement. Researchers used exercise echocardiography (heart ultrasound while pedaling) to measure lung artery pressure during exercise. The goal was to see if th…

This study looked at how symptoms of hereditary hemorrhagic telangiectasia (HHT) affect patients' quality of life. Researchers used a special questionnaire developed with patient input to measure different aspects like physical limits, worry about bleeding, and social relationshi…

This study collected umbilical cord blood and tissue from 16 newborns who have a parent with hereditary hemorrhagic telangiectasia (HHT), a genetic disorder causing abnormal blood vessels. Researchers aim to grow and compare endothelial cells from these babies with cells from hea…