Ehlers-Danlos syndrome

This study tests whether HBS-301 (pitolisant) can reduce excessive daytime sleepiness and cataplexy (sudden muscle weakness) in adults with narcolepsy. Participants receive either the drug or a placebo for several weeks, followed by an open-label phase where everyone gets the dru…

This study is following 35 adults who have received a Tipmed revision hip prosthesis during routine care. Researchers will track how well the hip works and any complications over 24 months. The goal is to see if the device performs safely and effectively in real-world use.

This study is testing whether custom-made or physician-modified stent grafts can safely repair complex aortic aneurysms in people who cannot use standard devices or undergo open surgery. The grafts are tailored to each patient's anatomy, with small holes to keep blood flowing to …

This study tests whether a special laser (MLS class IV) can reduce chronic pain and fatigue in people with hypermobile Ehlers-Danlos syndrome (hEDS), a condition that causes loose joints and widespread pain. Twenty-five adults will receive 10 laser sessions over 5 weeks, with pai…

This study tests whether Pilates, a gentle mind-body exercise, can help manage pain and other symptoms in people with hypermobile Ehlers-Danlos syndrome or hypermobility spectrum disorder. One hundred adults with persistent pain will be randomly assigned to either Pilates classes…

This study tests whether a custom wrist brace made with 3D scanning and printing can improve quality of life for people with Ehlers-Danlos Syndrome (EDS) compared to standard braces. The brace aims to reduce pain, prevent joint dislocations, and help with daily activities like co…

This study is testing whether a small, battery-powered device worn on the ear can reduce gastrointestinal symptoms in children aged 10-18 with hypermobile Ehlers-Danlos syndrome (hEDS) and related autonomic nervous system problems. The device, called IB-Stim, delivers gentle elec…

This study looks at whether women with Ehlers-Danlos syndrome (EDS) experience more severe period pain than those without the condition. Researchers will compare pain levels and other gynecological issues in 156 women using an online questionnaire. The goal is to better understan…

This study looks back at 483 patients who had small rectal neuroendocrine tumors (less than 2 cm) removed using one of two endoscopic techniques: endoscopic submucosal dissection (ESD) or endoscopic partial muscle resection (EPMR). The goal is to compare how often each method lea…

This study looks at people with multidirectional shoulder instability (loose shoulder joints) often linked to hypermobility disorders. Researchers want to see if electrical stimulation and specific exercises can improve shoulder control and reduce joint slipping. 60 participants …

This study is building a registry of 1,211 people in Brazil who have inherited heart conditions like cardiomyopathy, arrhythmias, and Marfan syndrome. Researchers will collect DNA samples and medical information to discover which genes are most commonly affected and how often the…

This study looks at whether people with vascular Ehlers-Danlos syndrome (vEDS), a rare genetic disorder that weakens blood vessels, also have problems with how their body stores and uses fat. Researchers will compare 12-17 adults with vEDS to similar adults without the condition …

This study looks at DNA methylation patterns (chemical tags on DNA) in fetuses with rare genetic diseases. Researchers will analyze DNA from amniotic fluid and tissue samples to create reference signatures. The goal is to improve diagnosis of these conditions before birth. The st…

This research study collects health information from 10,000 people with brain inflammation conditions like Long COVID, ME/CFS, and autoimmune diseases. Participants use a smartphone app to share symptoms, health history, and wearable data. The goal is to find disease subtypes and…

This study is building a large registry of up to 3,000 people with Ehlers-Danlos syndrome (EDS) in Italy. Researchers will collect medical history, genetic data, and quality-of-life information to better understand how EDS affects people over time. No new treatments are being tes…

This study is testing whether using rapid genetic sequencing can help doctors diagnose and treat birth defects in newborns in intensive care. Researchers will enroll 2,000 babies and compare death rates, disability rates, and genetic findings. The goal is to see if personalized t…