NCT03327779

Brief Summary

The WBDR is an international observational disease registry of patients with hemophilia. It will provide a platform for a network of hemophilia treatment centres (HTCs) around the world to collect uniform and standardized patient data and guide clinical practice. With informed consent from the patient, the WBDR stores anonymous data about the person's disease, such as hemophilia type and severity, symptoms, and treatment.

Trial Health

77
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
20,000

participants targeted

Target at P75+ for all trials

Timeline
20mo left

Started Jan 2018

Longer than P75 for all trials

Geographic Reach
1 country

1 active site

Status
recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress83%
Jan 2018Jan 2028

First Submitted

Initial submission to the registry

October 27, 2017

Completed
4 days until next milestone

First Posted

Study publicly available on registry

October 31, 2017

Completed
3 months until next milestone

Study Start

First participant enrolled

January 26, 2018

Completed
9.9 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

January 1, 2028

Expected
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

January 1, 2028

Last Updated

August 14, 2023

Status Verified

August 1, 2023

Enrollment Period

9.9 years

First QC Date

October 27, 2017

Last Update Submit

August 7, 2023

Conditions

Hemophilia AHemophilia BVon Willebrand Diseases

Outcome Measures

Primary Outcomes (3)

  • Number of participants recruited

    5 years

  • Number of participating Hemophilia Treatment Centres

    5 years

  • Number of participating countries

    5 years

Eligibility Criteria

Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodProbability Sample
Study Population

Patients of participating Hemophilia Treatment Centres with Hemophilia A or B, or von Willebrand Disease.

You may qualify if:

  • Patients of participating Hemophilia Treatment Centres with Hemophilia A or B, or von Willebrand Disease

You may not qualify if:

  • none

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

World Federation of Hemophilia

Montreal, Quebec, H3G 1T7, Canada

RECRUITING

MeSH Terms

Conditions

Hemophilia AHemophilia Bvon Willebrand Diseases

Condition Hierarchy (Ancestors)

Blood Coagulation Disorders, InheritedBlood Coagulation DisordersHematologic DiseasesHemic and Lymphatic DiseasesCoagulation Protein DisordersHemorrhagic DisordersGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesGenetic Diseases, X-LinkedBlood Platelet Disorders

Central Study Contacts

Donna Coffin, M.Sc.

CONTACT

+15148757944dcoffin@wfh.org

Emily Ayoub, Ph.D.

CONTACT

+15148757944eayoub@wfh.org

Study Design

Study Type
observational
Observational Model
ECOLOGIC OR COMMUNITY
Time Perspective
PROSPECTIVE
Target Duration
5 Years
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

October 27, 2017

First Posted

October 31, 2017

Study Start

January 26, 2018

Primary Completion (Estimated)

January 1, 2028

Study Completion (Estimated)

January 1, 2028

Last Updated

August 14, 2023

Record last verified: 2023-08

Locations

CA(1)