Clinical trials: Osler Weber Rendu Disease
Hereditary Hemorrhagic Telangiectasia (HHT), Rendu Osler Disease
IV Bevacizumab Treatment of Patients With Hereditary Hemorrhagic Telangiectasia (HHT) or Rendu-Osler (RO) Disease: A Retrospective Analysis of French Cohort Data From 2009 to 2024
Rendu-Osler disease (RO), also known as Hereditary Haemorrhagic Telangiectasia (HHT), is an autosomal dominant genetic disorder. Its pathophysiology is associated with an imbalance in angiogenic balance.
- Trial name
- CoBé (NCT07772050)
- Testing
- Real World data study.
- Where
- France
- Volunteers
- 244 people
- Sponsor
- Hospices Civils de Lyon
Telangiectasia, Hereditary Hemorrhagic
Studies of Hereditary Hemorrhagic Telangiectasia
OBJECTIVES: I. Examine screening modalities for pulmonary vascular arteriovenous malformation (PAVM) in individuals with endoglin mutations. II.
- Trial name
- NCT00004648
- Volunteers
- 65 people
- Sponsor
- National Center for Research Resources (NCRR)
Telangiectasia, Hereditary Hemorrhagic, Rendu Osler Disease
Diagnostic Value of Ultra-low Dose Thoracic Scanner for the Pulmonary Arteriovenous Malformation Detection in HHT Patient
Hereditary hemorrhagic telangiectasia (HHT) is linked to a dysregulation of angiogenesis leading to the formation of arteriovenous malformations (AVM): cutaneo-mucous telangiectasia and visceral shunts.
- Trial name
- ULD OSLER (NCT04108052)
- Testing
- Low CT scanner without injection dose, Ultra-low dose CT scanner without injection
- Where
- France
- Volunteers
- 45 people
- Sponsor
- Hospices Civils de Lyon
Hereditary Hemorrhagic Telangiectasia
Phase III Randomized, Placebo-Controlled, Crossover Study of Soy Protein Isolate for Hereditary Hemorrhagic Telangiectasia
OBJECTIVES: I. Evaluate migraine prophylaxis with soy protein isolate in patients with hereditary hemorrhagic telangiectasia. II.
- Trial name
- NCT00004654
- Testing
- soy protein isolate
- Volunteers
- 60 people
- Sponsor
- National Center for Research Resources (NCRR)
Hereditary Hemorrhagic Telangiectasia, HHT
Genotype-phenotype Association in Hereditary Hemorrhagic Telangiectasia
The present project aims to study the inflammatory and endothelial responses involved in the differences in clinical events related to both genotypes (ENG vs. ACVRL1) in HHT.
- Conditions
- Hereditary Hemorrhagic Telangiectasia, HHT, Rendu Osler Weber Disease
- Trial name
- Generate-HHT (NCT05550376)
- Testing
- Registry
- Where
- Spain
- Volunteers
- 85 people
- Sponsor
- Fundacion para la Investigacion Biomedica del Hospital Universitario Ramon y Cajal
Osler Rendu Disease, Hereditary Hemorrhagic Telangiectasia
Evaluation of Obstetrical and Neonatal Complications in Hereditary Haemorrhagic Telangiectasia (HHT)
Hereditary Haemorrhagic Telangiectasia (HHT) is a rare inherited genetic disease of autosomal dominant inheritance with a prevalence of about 1/5000.
- Trial name
- CONCERTO (NCT03691142)
- Testing
- Questionnaire
- Where
- France
- Volunteers
- 207 people
- Sponsor
- Hospices Civils de Lyon
Hereditary Hemorrhagic Telangiectasia, Gastrointestinal Hemorrhage
Octreotide in Patients With GI Bleeding Due to Rendu-Osler-Weber
The purpose of this study is to determine whether long-acting octreotide is safe and effective in the treatment of patients with Rendu-Osler-Weber (e.g. HHT).
- Conditions
- Hereditary Hemorrhagic Telangiectasia, Gastrointestinal Hemorrhage, Anemia
- Trial name
- ROW (NCT02874326)
- Testing
- Octreotide LAR
- Where
- 2 sites in Netherlands
- Volunteers
- 15 people
- Sponsor
- Radboud University Medical Center
Vascular Anomaly, Osler Rendu Disease
Pregnancy in Women With Rare Multisystemic Vascular Diseases: COGRare5 Study
There are no prospective studies of pregnancies for the diseases studied here in (Heredity Hemorrhagic Telangiectasia, Marfan syndrome or related, primary lower limb lymphedema, superficial arteriovenous malformations, and…
- Conditions
- Vascular Anomaly, Osler Rendu Disease, Marfan Syndrome or Related, Lymphedema Primary
- Trial name
- COGRare5 (NCT04194619)
- Testing
- Questionnaire
- Where
- 37 sites in France
- Volunteers
- 400 people
- Sponsor
- Hospices Civils de Lyon
Hereditary Hemorrhagic Telangiectasia (HHT)
Pomalidomide for the Treatment of Bleeding in Hereditary Hemorrhagic Telangiectasia Longitudinal Assessment Study
This is a multicenter U.S. longitudinal study evaluating patients with hereditary hemorrhagic telangiectasia who participated in the PATH-HHT clinical trial of pomalidomide for the treatment of HHT.
- Trial name
- PATH-HHT ATLAS (NCT07018401)
- Testing
- Pomalidomide
- Where
- 11 sites in United States
- Volunteers
- 62 people
- Sponsor
- Massachusetts General Hospital
Hereditary Hemorrhagic Telangiectasia, Ectasia
Phase II Pilot Study of Octreotide, a Somatostatin Octapeptide Analog, for Gastrointestinal Hemorrhage in Hormone-Refractory Hereditary Hemorrhagic Telangiectasia and Senile Ectasia
OBJECTIVES: I. Evaluate the efficacy of octreotide, a somatostatin octapeptide analog, in decreasing gastrointestinal bleeding in patients with hormone-refractory hereditary hemorrhagic telangiectasia or senile ectasia.
- Trial name
- NCT00004327
- Testing
- octreotide
- Volunteers
- 8 people
- Sponsor
- National Center for Research Resources (NCRR)
Telangiectasia, Hereditary Hemorrhagic, Rendu Osler Disease
Efficacy of Nintedanib Per os as a Treatment for Epistaxis in HHT Disease.
The recognized manifestations of HHT are all due to abnormalities in vascular structure. Epistaxis are spontaneous, very variable, may occur as often as several times every day, and are recurrent in 90% of patients and associated…
- Trial name
- EPICURE (NCT03954782)
- Testing
- Nintedanib 150 mg and 100 mg soft capsules
- Where
- 8 sites in France
- Volunteers
- 61 people
- Sponsor
- Hospices Civils de Lyon
All Diagnosed Health Conditions, ADD/ADHD
At-Home Research Study for Patients With Autoimmune, Inflammatory, Genetic, Hematological, Infectious, Neurological, CNS, Oncological, Respiratory, Metabolic Conditions
We are the missing link in clinical trials, connecting patients and researchers seamlessly and conveniently using a mobile health platform to advance medical research.
- Conditions
- All Diagnosed Health Conditions, ADD/ADHD, Alopecia Areata, Ankylosing Spondylitis
- Trial name
- NCT01931644
- Where
- United States
- Volunteers
- 17,667 people, healthy volunteers welcome
- Sponsor
- Sanguine Biosciences
Telangiectasia, Hereditary Hemorrhagic, Osler-Rendu Disease
ATERO : A Randomised Study With Tranexamic Acid in Epistaxis of Rendu Osler Syndrome
Scientific Objectives Primary objective : Demonstrate that oral intake of tranexamic acid significantly reduces the risk of epistaxis occurrence, estimated by the average monthly duration of episodes of epistaxis.
- Trial name
- NCT00355108
- Testing
- tranexamic acid
- Where
- France
- Volunteers
- 170 people
- Sponsor
- Hospices Civils de Lyon
Hereditary Hemorrhagic Telangiectasia
Study of the Natural History and Genotype-Phenotype Correlations of Hereditary Hemorrhagic Telangiectasia Patients
OBJECTIVES: I. Collect data regarding the natural history of hereditary hemorrhagic telangiectasia (HHT). II. Establish genotype-phenotype correlations in HHT. III.
- Trial name
- NCT00004649
- Sponsor
- National Center for Research Resources (NCRR)
Osler-Rendu-Weber Disease, Osler-Rendu Disease
Screening Behavior in Adults With Hereditary Hemorrhagic Telangiectasia
This study will explore the factors that influence screening behaviors of adults diagnosed with hereditary hemorrhagic telangiectasia (HHT), an inherited condition in which blood vessel defects called arteriovenous malformations…
- Conditions
- Osler-Rendu-Weber Disease, Osler-Rendu Disease, Telangiectasia, Hereditary Hemorrhagic
- Trial name
- NCT00684879
- Where
- United States
- Volunteers
- 320 people
- Sponsor
- National Human Genome Research Institute (NHGRI)
Telangiectasia, Hereditary Hemorrhagic, Osler Rendu Disease
Efficacy of a Timolol Nasal Spray as a Treatment for Epistaxis in Hereditary Hemorrhagic Telangiectasia (HHT) - (TEMPO)
Timolol is a nonselective β-blocker commonly used in the treatment of glaucoma. Recently it has been used topically for the treatment of superficial hemangiomas.
- Trial name
- TEMPO (NCT02484716)
- Testing
- Timolol nasal spray
- Where
- France
- Volunteers
- 58 people
- Sponsor
- Hospices Civils de Lyon
Hereditary Hemorrhagic Telangiectasia, Epistaxis
Effects of Pazopanib on Hereditary Hemorrhagic Telangiectasia Related Epistaxis and Anemia (Paz)
During the Efficacy Study (Part B), the investigators will study whether Pazopanib, taken daily for 24 weeks, will reduce the severity of nose bleeds in patients with hereditary hemorrhagic telangiectasia (HHT).
- Conditions
- Hereditary Hemorrhagic Telangiectasia, Epistaxis, Anemia, Nosebleed
- Trial name
- Paz (NCT03850964)
- Testing
- Pazopanib
- Where
- 11 sites in United States
- Volunteers
- 70 people
- Sponsor
- Cure HHT
Rendu Osler Disease, Telangiectasia, Hereditary Hemorrhagic
BABH Study: Efficacy and Safety of Bevacizumab on Severe Bleedings Associated With Hemorrhagic Hereditary Telangiectasia (HHT).
The recognized manifestations of HHT are all due to abnormalities of vascular structure. Epistaxis and digestive arteriovenous malformations may be responsible for severe hemorrhages in 5% of HHT patients, requiring repeated…
- Trial name
- BABH (NCT03227263)
- Testing
- Bevacizumab, sodium chloride 0.9%
- Where
- 4 sites in France
- Volunteers
- 24 people
- Sponsor
- Hospices Civils de Lyon
Pulmonary Arteriovenous Malformations, Hereditary Hemorrhagic Telangiectasia
Cardiopulmonary Exercise Testing to Evaluate Pulmonary AVMs With and Without Airflow Obstruction
Pulmonary arteriovenous malformations (PAVMs) are a rare vascular condition affecting the lungs. PAVMs lead to low blood oxygen levels, yet are very well tolerated by patients.
- Conditions
- Pulmonary Arteriovenous Malformations, Hereditary Hemorrhagic Telangiectasia, Asthma, COPD
- Trial name
- ExercisePAVM2 (NCT02458703)
- Testing
- Cardiopulmonary exercise test
- Volunteers
- 60 people
- Sponsor
- Imperial College London
Hereditary Hemorrhagic Telangiectasia
A Study to Evaluate ALN-6400 in Healthy Volunteers and Patients With Hereditary Hemorrhagic Telangiectasia (HHT)
The purpose of this study is to: evaluate the safety, tolerability, pharmacokinetics (PK) and pharmacodynamics (PD) of single ascending doses of ALN-6400 in healthy volunteers evaluate the efficacy, safety, tolerability and PD of…
- Trial name
- InsigHHT (NCT06659640)
- Testing
- ALN-6400
- Where
- 16 sites in United States, Australia and 4 more
- Volunteers
- 89 people, healthy volunteers welcome
- Sponsor
- Alnylam Pharmaceuticals