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The Lived Experience of People With Von Willebrand Disease

NCT06064643 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 611

Last updated 2025-09-18

No results posted yet for this study

Summary

von Willebrand disease (vWD) is reported to be the most common bleeding disorder, with prevalence estimated at 1% of the general population. Despite this, little is known about its natural history, or of the impact it has on affected individuals and their families.

The Haemnet vWD360 programme is a mixed-methods, natural history study designed to gain a greater understanding of vWD and its impact on individuals and their families. It comprises both qualitative and quantitative approaches and is designed to include the perspectives of individuals with a diagnosis of any subtype of vWD.

The vWD360 study includes three components:

* Quantitative cross-sectional survey
* Qualitative one-to-one interviews with affected individuals
* 30-day bleed diary.

Conditions

  • Von Willebrand Diseases

Interventions

OTHER

Online Survey

All participants will be asked to complete an online survey

OTHER

Qualitative Interview

30 survey participants will take part in a single one-hour qualitative interview.

OTHER

Bleed Diary

50 participants will complete a 30 day bleed diary

Sponsors & Collaborators

  • Hemab ApS

    collaborator INDUSTRY

  • Haemnet

    lead OTHER

Principal Investigators

  • Simon Fletcher, MA · Haemnet

Eligibility

Min Age
16 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2023-12-08
Primary Completion
2025-06-30
Completion
2025-06-30

Countries

  • United Kingdom

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT06064643 on ClinicalTrials.gov