Review of medical records for patients with hereditary bleeding disorders
Official title: Hammersmith Hospital Patients With Pulmonary Arteriovenous Malformations (PAVMs) and Hereditary Haemorrhagic Telangiectasia
Run by Imperial College London · NCT00230685 · Data updated 2026-11-12
This study looks at medical records of people with hereditary bleeding disorders to see if certain traits can help predict complications like strokes or pregnancy-related issues.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 2000 (estimated) |
| Sponsor | Imperial College London Academic / other |
| Locations | 1 site (London) |
| Status | Recruiting |
| Started | January 2000 |
| Main results expected | January 2028 |
| Study ends | January 2028 |
| Registry record updated | September 28, 2023 |
| Trial ID | NCT00230685 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study are patients attending Hammersmith Hospital with a diagnosis of hereditary hemorrhagic telangiectasia.
✕Probably not a fit
Patients who do not attend Hammersmith Hospital or do not have hereditary hemorrhagic telangiectasia will not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational study focuses on individuals with hereditary hemorrhagic telangiectasia and pulmonary arteriovenous malformations at Hammersmith Hospital in London. The study aims to analyze clinical data collected since 1985 to identify specific characteristics that may predict complications such as strokes, brain abscesses, pregnancy-related issues, or pulmonary hypertension. By reviewing case notes, researchers hope to enhance understanding of the condition and improve patient management.
Why it matters
Potential benefit: If successful, this study could lead to better prediction and management of complications in patients with hereditary hemorrhagic telangiectasia.
How similar studies have gone: While this study builds on existing clinical practices, similar observational studies have shown success in identifying risk factors for complications in hereditary conditions.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Patients attending Hammersmith Hospital Exclusion Criteria: * None
Where it's running
-
Respiratory Medicine, Hammersmith Hospital
London, United Kingdom Recruiting
Study contacts
- Principal investigator: Claire L Shovlin — Imperial College London
- Study coordinator: Claire L Shovlin
- Email: c.shovlin@imperial.ac.uk
- Phone: 0208 383 1000
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Using nintedanib to treat nosebleeds in patients with hereditary hemorrhagic telangiectasia
This study is testing if the medication nintedanib can help reduce the number and severity of nosebleeds in people with hereditary hemorrhagic telangiectasia.
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Examining genes in families affected by hereditary hemorrhagic telangiectasia
This study is trying to find out which genes are linked to hereditary hemorrhagic telangiectasia by looking at the DNA of family members who have and don’t have the condition.
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Body donation in HHT
This study tests whether donated human tissue with and without vascular malformations from people with hereditary hemorrhagic telangiectasia can be analyzed to better understand the disease.
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Engasertib for moderate to severe HHT: see if daily 40 mg helps with nosebleeds
This trial tests whether taking engasertib once daily for 28 weeks reduces nosebleed frequency in adults with hereditary hemorrhagic telangiectasia compared with placebo.
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DIAG723 in Adults With HHT
A first-in-human study tests DIAG723 versus placebo in adults with hereditary hemorrhagic telangiectasia to see if it is safe and possibly helpful.
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Registry for patients with Hereditary Hemorrhagic Telangiectasia
This study is collecting information from people with Hereditary Hemorrhagic Telangiectasia to better understand the condition and help improve treatments in the future.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.