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RecruitingNCT03327779WBDRUpdated Aug 14, 2023

World Bleeding Disorders Registry

An observational study in Hemophilia A, Hemophilia B and Von Willebrand Diseases, sponsored by World Federation of Hemophilia. Recruiting at 1 site in Canada. Per ClinicalTrials.gov, last updated 2023-08-14.

Sponsored by World Federation of Hemophilia · Observational

From the registry’s dates

  • Started Jan 2018; still recruiting 8 years 9 months later.
Study type
Observational
Model
Ecologic or community
Time perspective
Prospective
Enrollment
20,000
Sex
All
01

Where this study stands

Counted across the records on this site · 2026-11-13

Among 106 studies in Hemophilia A with a site in Canada — 16 open to participants now, 28 under way, 15 of them phase 3. Hemophilia A · Canada.

Planned enrollment
Largest of 33
20,000 · median 190
Started
2018
with 11 others
Observational
33 of 106
6 open now
Primary completion
2028-01
later than 15 of 27 live
Registered
54th of 106
by date

Among the 106 studies in Hemophilia A with a site in Canada, this one has the largest planned enrollment of the 33 observational ones that give a count, is one of 12 that started in 2018, is one of 33 observational ones, reaches primary completion later than 15 of the 27 other live ones, and was the 54th registered.

Hemophilia A

844 studies on the registry are indexed under Hemophilia A; 136 are open to participants now.

Browse Hemophilia A studies →

Open to participants now

16 of the 106 studies in Hemophilia A with a site in Canada are open now. Recruiting first, the newest first:

10 more — sign in →

All 16 open studies →

A study can be open while its sites in Canada have not opened yet or have stopped. Only those recruiting at a site in Canada →

Who these studies take

Of the 86 Hemophilia A studies recruiting now, 51 (59%) set no upper age limit and 30 (35%) stop at 75 or younger; 54 take children under 18; 10 take healthy volunteers.

This study: all sexes · no healthy volunteers.

The full table on the hub →

This tab as a report to print or save as PDF → With an account.

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02

Study 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.

Read the detailed description

The WBDR is a prospective, global registry of patients diagnosed with hemophilia A and B. Following the success of a pilot study, implementation of the full scale WBDR is underway. The goals are to enroll at least 200 HTCs from more than 50 countries, and at least 10,000 people with hemophilia, during the first five years, aiming for representation of patients from around the world and from all levels of access to care. Minimal criteria for participation of HTCs include access to reliable internet, human resources for data entry and commitment to long-term enrolment and follow-up of patients. The WBDR database is being developed through a collaboration between the WFH, Karolinska Institute and Health Solutions.

By combining data from countries around the world, the WBDR will provide a large amount of real world data, on which researchers can address important scientific and clinical issues. The World Bleeding Disorders Registry (WBDR) is intended to fill existing gaps in knowledge by collecting real world data on the patient clinical experience around the globe.

03

Conditions studied

  • Hemophilia A
  • Hemophilia B
  • Von Willebrand Diseases
04

Who can participate

Ages eligible
Child (0–17), Adult (18–64), Older adult (65+)
Sexes eligible
All
Accepts healthy volunteers
No
Sampling method
Probability sample

Study population

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

Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.

Inclusion criteria

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

Exclusion criteria

Exclusion Criteria:

  • none
05

Study design

Observational model
Ecologic or community
Time perspective
Prospective
Enrollment
20,000 participants (estimated)
Target follow-up
5 Years
Patient registry
Yes
06

What researchers measure

Primary outcomes

  1. Number of participants recruited

    Time frame: 5 years

  2. Number of participating Hemophilia Treatment Centres

    Time frame: 5 years

  3. Number of participating countries

    Time frame: 5 years

07

Study locations

1 of 1 sites recruiting
  • World Federation of Hemophilia
    Montréal, Quebec H3G 1T7, Canada
    Recruiting
08

Timeline

Tracking since Sep 25, 2026
ElapsedEstimatedEstimated, not yet reachedSimilar studies: half by the dot; the band is the middle halfHalf of similar studies reached it by the dot; the band is the middle half, from a quarter to three quarters

Started Jan 2018 (actual). Primary completion is estimated for Jan 2028, 120 months after the start.

Of 78 non-industry observational studies under Hemophilia A, half reached primary completion within 36 months of starting (the median), counting those still running; a quarter within 15 and three quarters within 96. This study's planned 120 months is above that.

Counting every sponsor, half of 131 studies reached it within 45 months; a quarter within 25 and three quarters within 79.

How these figures are worked out, and which studies are left out of them.

Registered
Oct 27, 2017
First posted
Oct 31, 2017
StartActual
Jan 26, 2018
Primary completionEst.
Jan 2028
CompletionEst.
Jan 2028
Last update
Aug 14, 2023
What these dates mean
Start.
When the first participant enrolled; while estimated, when the study expects to open to recruitment.
Primary completion.
When the last participant was examined or treated to collect data for the study's main question, its primary outcome. A study that stopped early gives the date its data collection stopped.
Completion.
When the last participant's last visit took place, for every outcome, secondary ones and side effects included: the end of the study. Often later than primary completion, sometimes the same day.
Actual and Est.
Actual means the registry says the date has happened. Est. (estimated) is a date the sponsor plans or expects. It can still move, and the sponsor is expected to change it to actual once it has passed.
No changes since tracking began. The registry record was last updated on Aug 14, 2023, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
09

Registry details

Key details

Study ID
NCT03327779
Lead sponsor
World Federation of Hemophilia
Responsible party
Sponsor
First posted
Oct 31, 2017
Start date
Jan 26, 2018
Primary completion
Jan 2028 (estimated)
Completion
Jan 2028 (estimated)
Last update
Aug 14, 2023

Study contacts

Donna Coffin, M.Sc.
Contact
dcoffin@wfh.org
+15148757944 ext. 2832
Emily Ayoub, Ph.D.
Contact
eayoub@wfh.org
+15148757944 ext. 2864

Oversight

Data monitoring committee
Yes
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

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