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Clinical Trial Summary

The World Federation of Hemophilia (WFH) is conducting the pilot phase of an international, observational, World Bleeding Disorders Registry (WBDR). This pilot phase will assess the feasibility of conducting an expanded WBDR to more centres with a more comprehensive case report form, around the world.


Clinical Trial Description

The pilot phase of the WBDR is an observational disease registry of patients with hemophilia. Forty hemophilia treatment centres (HTCs), of varying levels of economic development (emerging, mid-level and established), that have data entry capabilities and the ability to obtain the required data on patients in English, were invited to participate in the pilot phase. Participating HTCs will complete a Minimal Data Set (MDS) of data on approximately 10 patients each.

A series of performance indicators have been identified by the Steering committee and will be used to assess the feasibility of expanding the pilot phase to the WBDR. The performance indicators include: proportion of HTCs invited that are willing to participate; proportion of participating HTCs who successfully obtain necessary regulatory approvals; proportion of patients approached who consent to participate; proportion of enrolled patients on which data collection and database entry is successful. ;


Study Design


Related Conditions & MeSH terms


NCT number NCT02776826
Study type Observational [Patient Registry]
Source World Federation of Hemophilia
Contact
Status Completed
Phase N/A
Start date July 2016
Completion date December 2016

See also
  Status Clinical Trial Phase
Completed NCT04055051 - ATHN 11: Liver Transplantation Outcomes Study
Terminated NCT03597022 - Multiple Escalating Dose Study of BAY1093884 in Adults With Hemophilia A or B With or Without Inhibitors Phase 2