Status:
COMPLETED
The Lived Experience of People With Von Willebrand Disease
Lead Sponsor:
Haemnet
Collaborating Sponsors:
Hemab ApS
Conditions:
Von Willebrand Diseases
Eligibility:
All Genders
16+ years
Brief 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...
Detailed Description
von Willebrand Disease (vWD) is an inherited blood clotting (coagulation) disorder characterized by a reduction (quantitative) or poor function (qualitative) defect of factor VIII (FVIII) and/or von W...
Eligibility Criteria
Inclusion
- Adults aged 16 and above (UK and Ireland) and adults aged over 18 (in USA) with a confirmed diagnosis of inherited vWD of known diagnostic subtype and vWF level.
- For the qualitative interview-based substudy, 30 adults who have completed the survey and who wish to be interviewed will be purposively selected for a broad range of ages and diagnostic subtype.
- For the bleed diary substudy, 50 adults who have completed the survey and who wish to take part will be purposively selected for a broad range of ages and diagnostic subtype.
Exclusion
- Participants will be excluded from the study if they:
- Have acquired vWD
- Have other inherited bleeding disorders
- Do not wish to participate in or to consent to the study.
- Those for whom written/spoken English would prohibit participation will also be excluded.
Key Trial Info
Start Date :
December 8 2023
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
June 30 2025
Estimated Enrollment :
611 Patients enrolled
Trial Details
Trial ID
NCT06064643
Start Date
December 8 2023
End Date
June 30 2025
Last Update
September 18 2025
Active Locations (1)
Enter a location and click search to find clinical trials sorted by distance.
1
Oxford University Hospitals NHS Foundation Trust
Oxford, Oxfordshire, United Kingdom, OX3 9DU