A Survey to Describe the Experience and Unmet Needs of Persons Living With Von Willebrand Disease (VWD) and Their Caregivers

Inclusion criteria:

• Phase 1:
• Adult participants (age ≥18 years) with severe VWD (self-BAT ≥10)
• Participants who have received von Willebrand factor (VWF) treatment, either foron-demand treatment, regular prophylaxis, or situational prophylaxis (e.g., surgery)within the last 5 years
• For caregivers: Current caregiver of participants with severe VWD
• For caregivers and participants:
• Fluent in English or French
• Consent to participate in an individual phone interview and to fillself-administered questionnaires
• Additional inclusion criteria for virtual focus groups:
• Access to technology (Internet and email)
• Consent to participate in a virtual focus group with an audio recording ofthe session.
• Phase 2:
• Same as above for participants pediatric participants (age <18 years) with severeVWD (self-PBQ score of ≥3 for at least one symptom).

Exclusion criteria:

• Phase 1:
• Participants or caregivers of participants who do not have severe symptoms of VWD
• Pediatric participants (age <18 years)
• Participants who have not received any treatment (on-demand, regular or situationalprophylaxis) within the last five years
• Participants who are successfully treated with desmopressin or anti-fibrinolyticmedications
• Participants with inherited or acquired hemostatic or bleeding disorders other thancongenital VWD (self-reported)
• Participants and caregivers of participants who show cognitive impairment (as assessedby the research nurse at the time of screening)
• Participants and caregivers who are qualified as health care practitioners currentlyworking in a health-care capacity (e.g., physician, nurse, or healthcare aid)
• Participants or caregivers who do not reside in Canada
• Current or past participation within the last 12 months in a clinical trial
• Phase 2: Same as above excluding participants of ≥18 years of age