Understanding the experiences of people with Von Willebrand Disease
The Lived Experience of People With Von Willebrand Disease
This study is trying to learn more about the everyday experiences of adults living with Von Willebrand Disease to better understand how it affects their lives and families.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 500 (estimated) |
| Ages | 16 Years and up |
| Sex | All |
| Sponsor | Haemnet Academic / other |
| Locations | 1 site (Oxford, Oxfordshire) |
| Trial ID | NCT06064643 on ClinicalTrials.gov |
What this trial studies
This observational study aims to explore the lived experiences of individuals diagnosed with Von Willebrand Disease (vWD), the most common bleeding disorder. It employs a mixed-methods approach, combining quantitative surveys, qualitative interviews, and a 30-day bleed diary to gather comprehensive data on the condition's impact on patients and their families. Participants will include adults with confirmed inherited vWD, and the study will focus on various subtypes of the disease. The goal is to enhance understanding of vWD's natural history and its effects on daily life.
Who should consider this trial
Good fit: Ideal candidates are adults aged 16 and above in the UK and Ireland, or over 18 in the USA, with a confirmed diagnosis of inherited Von Willebrand Disease.
Not a fit: Patients with acquired Von Willebrand Disease or other inherited bleeding disorders may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could provide valuable insights that improve the management and treatment of Von Willebrand Disease.
How similar studies have performed: While there is limited research specifically on the lived experiences of vWD patients, similar qualitative studies in other bleeding disorders have shown success in enhancing understanding and improving patient care.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * 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 Criteria: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.
Where this trial is running
Oxford, Oxfordshire
- Oxford University Hospitals NHS Foundation Trust — Oxford, Oxfordshire, United Kingdom (Recruiting)
Study contacts
- Principal investigator: Simon Fletcher, MA — Haemnet
- Study coordinator: Simon Fletcher, MA
- Email: simon@haemnet.com
- Phone: 07891038065
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.