Clinical trials: Osler-Rendu Disease
Hereditary Haemorrhagic Telangiectasia (HHT)
Quality of Life in Pediatric Participants With HHT
This observational study evaluates health-related quality of life (HR-QoL) in pediatric and young adult patients aged 2-25 years with Hereditary Hemorrhagic Telangiectasia (HHT).
- Trial name
- NCT07474428
- Where
- United States
- Volunteers
- 70 people
- Sponsor
- Ashley Nelson
Telangiectasia, Hereditary Hemorrhagic
Study of Endothelial Cells in Patients With Hereditary Haemorrhagic Telangiectasia
Hereditary Haemorrhagic Telangiectasia (HHT, also known as Osler-Weber-Rendu Syndrome) is an disease that leads to the development of dilated and fragile blood vessels.
- Trial name
- NCT00733629
- Where
- United Kingdom
- Sponsor
- Imperial College London
Hereditary Haemorrhagic Telangiectasia, Pulmonary Arteriovenous Malformation
Pulmonary Arteriovenous Malformations (PAVMs) in Hereditary Haemorrhagic Telangiectasia (HHT)
Computed tomography (CT) is the modality of choice to characterize pulmonary arteriovenous malformations (PAVMs) in patients with hereditary haemorrhagic telangiectasia (HHT).
- Conditions
- Hereditary Haemorrhagic Telangiectasia, Pulmonary Arteriovenous Malformation, Cerebral Disorder
- Trial name
- PAVM (NCT03940014)
- Testing
- Data collection from standard follow up
- Volunteers
- 170 people
- Sponsor
- Hospices Civils de Lyon
Hereditary Haemorrhagic Telangiectasia
Hereditary Haemorrhagic Telangiectasia Flight Safety Study
Hereditary Haemorrhagic Telangiectasia (HHT) is a condition in which sufferers have abnormal blood vessels which makes them more likely to bleed than other people, particularly in the lungs, which results in low blood oxygen…
- Trial name
- Flying and HHT (NCT01590121)
- Testing
- Aeroplane flight in the past- no active intervention for study, Questionnaire
- Where
- United Kingdom
- Volunteers
- 156 people
- Sponsor
- Imperial College London
Hereditary Hemorrhagic Telangiectasia, Dental Diseases
Nationwide Awareness Campaign and Call for Dental Screening for HHT in Germany
HHT is a relative rare autosomal dominant inherited disorder of the fibrovascular tissue. Diagnosis of HHT is often delayed for decades (Pierucci 2012).
- Trial name
- NCT03549949
- Where
- Germany
- Volunteers
- 411 people, healthy volunteers welcome
- Sponsor
- University Hospital, Essen
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)
Hereditary Hemorrhagic Telangiectasia
Cardiac Evaluation in Hereditary Hemorrhagic Telangiectasia
Hereditary haemorrhagic telangiectasia (HHT) is a rare autosomal dominant genetic disease associated with mutations in genes encoding proteins of the transforming growth factor β (TGF-β) family, i.e.
- Trial name
- CARDI-HHT (NCT07101575)
- Testing
- Transthoracic echocardiography
- Volunteers
- 380 people
- Sponsor
- Fondazione Policlinico Universitario Agostino Gemelli IRCCS
Telangiectasia, Hereditary Hemorrhagic
Molecular Studies on Hereditary Haemorrhagic Telangiectasia Families
This study will examine genes involved in the vascular dysplasia Hereditary haemorrhagic telangiectasia i(HHT)
- Trial name
- NCT00230620
- Where
- United Kingdom
- Volunteers
- 1,000 people
- Sponsor
- Imperial College London
Telangiectasia, Hereditary Hemorrhagic
Case Notes Review on Patients With Hereditary Haemorrhagic Telangiectasia
This observational study is for individuals with Hereditary haemorrhagic telangiectasia and pulmonary arteriovenous malformations that are reviewed at the Hammersmith Hospital, London.
- Trial name
- NCT00230685
- Where
- United Kingdom
- Volunteers
- 2,000 people
- Sponsor
- Imperial College London
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)
Telangiectasia, Hereditary Hemorrhagic
Investigation of Plasma Proteins in Patients With Hereditary Haemorrhagic Telangiectasia and PAVMs
Hereditary Haemorrhagic Telangiectasia (HHT, also known as Osler-Weber-Rendu Syndrome) is an disease that leads to the development of dilated and fragile blood vessels, including arteriovenous malformations in the lungs (PAVMs).
- Trial name
- NCT00230672
- Where
- United Kingdom
- Volunteers
- 1 people
- Sponsor
- Imperial College London
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 Haemorrhagic Telangiectasia
Genotype Expression and Phenotype of Endothelial Cells, Carrying an ACVRL1, ENG or SMAD4 Mutation, in Response to BMP9 for the Identification of New Therapeutic Targets in Hereditary Haemorrhagic Telangiectasia
Hereditary hemorrhagic telangiectasia (HHT) or Osler-Weber-Rendu syndrome patients are carriers of a heterozygous mutation of the activin receptor-like kinase 1 (ACVRL1), Endoglin (ENG) or Mothers against decapentaplegic homolog…
- Trial name
- CAERO (NCT05632484)
- Testing
- Cord blood sampling, Cord sampling
- Where
- 3 sites in France
- Volunteers
- 16 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)
Telangiectasia, Hereditary Hemorrhagic
Study of Histological Samples From Patients With Hereditary Haemorrhagic Telangiectasia
In this study the investigators will obtain histological samples from people with hereditary haemorrhagic telangiectasia (HHT, also known as Osler-Weber-Rendu Syndrome).
- Trial name
- NCT00733655
- Where
- United Kingdom
- Volunteers
- 6 people
- Sponsor
- Imperial College London
Hereditary Hemorrhagic Telangiectasia, Arteriovenous Malformations
Comprehensive HHT Outcomes Registry of the United States (CHORUS)
The Comprehensive HHT Outcomes Registry of the United States (CHORUS) is an observational registry of patients diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT).
- Conditions
- Hereditary Hemorrhagic Telangiectasia, Arteriovenous Malformations, Telangiectasia, Epistaxis
- Trial name
- CHORUS (NCT06259292)
- Where
- 16 sites in United States
- Volunteers
- 10,000 people, healthy volunteers welcome
- Sponsor
- Cure HHT
Hereditary Haemorrhagic Telangiectasia, Liver Transplant
Recurrence of Hereditary Hemorrhagic Telangiectasia (HHT) After Liver Transplantation
Liver transplantation (LT) has been proposed as a curative treatment in hereditary hemorrhagic telangiectasia (HHT) with severe hepatic involvement.
- Trial name
- HHT (NCT03942315)
- Testing
- Data collection from standard follow-up after liver transplant
- Volunteers
- 14 people
- Sponsor
- Hospices Civils de Lyon
Hereditary Hemorrhagic Telangiectasia
Ultra-low-dose Chest CT for HHT
This study aims to develop a novel ultra-low dose chest CT technology for use in Hereditary Hemorrhagic Teleangiectasia (HHT) patients and to determine the lowest possible radiation dose that is achievable without sacrificing the…
- Trial name
- NCT04874558
- Testing
- Ultra-low dose chest CT
- Where
- United States
- Volunteers
- 3 people
- Sponsor
- Mayo Clinic
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
Pulmonary Arteriovenous Malformation
Microvascular Plug (MVP) for the Treatment of Pulmonary ArterioVenous Malformations (PAVMs)
The purpose of this study is to compare the use of the Micro Vascular Plug (MVP) system and other embolic devices in treatment of PAVMs.
- Trial name
- NCT04396041
- Testing
- Microvascular Plug (MVP), Amplatzer Vascular Plug (AVP), Detachable coils
- Where
- United States
- Volunteers
- 223 people
- Sponsor
- Johns Hopkins University