Clinical trial Recruiting at 1 site Observational

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.

More Hereditary Hemorrhagic Telangiectasia trials

Quick facts

Study typeObservational
SexAll
Enrollment2000 (estimated)
SponsorImperial College London
Academic / other
Locations1 site (London)
StatusRecruiting
StartedJanuary 2000
Main results expectedJanuary 2028
Study endsJanuary 2028
Registry record updatedSeptember 28, 2023
Trial IDNCT00230685 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

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

  • 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.

    Recruiting at 2 sites Phase 2 Centre Hospitalier Universitaire Vaudois · Bron and 2 other locations · NCT04976036

  • 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.

    Recruiting Imperial College London · London · NCT00230620

  • 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.

    Recruiting University Hospital, Essen · Essen, North Rhine-Westphalia · NCT07826845

  • 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.

    Recruiting at 4 sites Phase 3 Vaderis Therapeutics AG · Chicago, Illinois and 3 other locations · NCT07743671

  • 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.

    Recruiting at 3 sites Phase 1/2 Diagonal Therapeutics, Inc. · Camperdown, New South Wales and 10 other locations · NCT07623525

  • 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.

    Recruiting at 16 sites Cure HHT · Birmingham, Alabama and 15 other locations · NCT06259292

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.