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N/A N=56

Bleeding Incidence in VWD Patients Undergoing On-Demand Treatment

Von Willebrand Diseases

Enrolled (actual)
56
Serious AEs
0.0%
Results posted
Dec 2023
Primary outcome: Primary: Total Annualized Bleeding Rate (TABR) — 29.13 Bleeding events per year

Study Design & Population

Study type
Observational
Phase
N/A
Interventions
Von Willebrand Factor-Containing Product (Drug)
Age
Pediatric, Adult, Older Adult · 0+ yrs
Sex
All
Sponsor
Octapharma
Primary completion
Jan 2021

Outcome Measures

OutcomeResultp-value
PRIMARY
Total Annualized Bleeding Rate (TABR)
29.13
SECONDARY
Spontaneous Annualized Bleeding Rate (SABR)
21.19
SECONDARY
Consumption of the VWF-containing Product
77.94
SECONDARY
Number of Bleeding Episodes (BEs) Based on a 4-point Efficacy Scale
450; 6; 1; 0
SECONDARY
Number of Surgery With Successful/Unsuccessful Efficacy Assessment
7; 0; 0; 0
SECONDARY
Quality of Life (QoL) Assessed Using the Patient-Reported Outcomes Measurement Information System (PROMIS-29)
47.24; 53.57; 49.96; 49.77; 49.81; 52.78
SECONDARY
Quality of Life (QoL) Assessed Using a 36-Item Short Form Health Survey, Version 2 (SF-36v2)
49.87; 49.45; 62.74; 64.03; 62.63; 51.21
SECONDARY
Quality of Life (QoL) Assessed Using a 10-item Short Form Health Survey (SF-10)
28.60; 46.56
SECONDARY
Joint Health Status Assessed Using Hemophilia Joint Health Score (HJHS)
6.76
SECONDARY
Menstrual Bleeding Assessed Using Pictorial Blood Loss Assessment Chart (PBAC) Score
521.7; 279.2; 311.0; 408.8; 289.9; 330.4
SECONDARY
Number of Participants With Adverse Drug Reactions (ADRs) Associated With Use of Wilate

Summary

The purpose of this study is to prospectively obtain reliable data on the bleeding and treatment pattern of patients with VWD undergoing on-demand treatment with a VWF-containing product over a period of 6 months. The data obtained will be used as a basis for historical comparisons with the bleeding and treatment pattern obtained from a clinical study on the efficacy of prophylactic treatment with a VWF/FVIII concentrate.

Eligibility Criteria

Inclusion Criteria

Patients who meet all of the following criteria are eligible for the study:

  • Male or female patients aged ≥5.5 years at the time of enrolment
  • VWD type 1 (baseline von Willebrand factor activity [VWF:RCo], <30 IU/dL), 2A, 2B, 2M, or 3 according to medical history requiring substitution therapy with a VWF-containing product to control bleeding
  • Currently receiving frequent on-demand treatment with a VWF-containing product
  • In female patients of child-bearing potential using hormonal contraception, the medication class should remain unchanged for the duration of their study participation
  • Voluntarily given, fully informed written and signed consent obtained before collection of any patient data

Exclusion Criteria

Patients who meet any of the following criteria are not eligible for the study:

  • Patients currently on prophylaxis for VWD (except for perioperative prophylaxis) as well as patients having received treatment once a month for menstrual bleeding, but not for any other bleeds
  • Patients whose VWD treatment is planned to be switched from on-demand to prophylactic treatment in the next 6 months
  • History, or current suspicion, of VWF or FVIII inhibitors
  • Medical history of a thromboembolic event within 6 months before enrolment
  • Severe liver or kidney diseases as described in the medical records
  • Female patients with an existing or suspected pregnancy or who are breast-feeding at the time of enrolment
  • Change in hormonal contraception within 6 months before enrolment
  • Cervical or uterine conditions causing abnormal uterine bleeding (including infection or dysplasia)
  • Other coagulation disorders or bleeding disorders due to anatomical reasons
  • Participation in an interventional clinical study during the 6-month of study period
  • Inability to complete the patient diary to reliably evaluate the type, frequency, and treatment of BEs during the 6-month study period
View full record on ClinicalTrials.gov →

Data sourced from ClinicalTrials.gov (NCT04053699). Outcome figures and adverse-event rates are extracted automatically from the registry's posted results and are provided for clinician reference, not as a substitute for the primary publication.

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