The Lived Experience of People With Von Willebrand Disease

Launched by HAEMNET · Sep 26, 2023

Keywords

ClinConnect Summary

This clinical trial, called the Haemnet vWD360 programme, is focused on understanding von Willebrand disease (vWD), the most common bleeding disorder that affects about 1% of the general population. The researchers want to learn more about how vWD affects the lives of those diagnosed with it and their families. To do this, they will gather information through surveys, personal interviews, and a 30-day diary that tracks bleeding episodes. This study is important because, despite how common vWD is, there is still a lack of understanding about its natural history and overall impact.

If you are an adult aged 16 or older (in the UK and Ireland) or 18 and older (in the USA) with a confirmed diagnosis of inherited vWD, you might be eligible to participate. The study includes individuals from various age groups and different types of vWD. Participants can expect to fill out a survey, possibly take part in an interview, and keep a diary of their bleeding events for a month. It's a chance to share your experiences and help improve knowledge about vWD for everyone affected by this condition. However, if you have acquired vWD, other inherited bleeding disorders, or are unable to participate in English, you will not be eligible for this study.

Gender

ALL

Eligibility 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.