WFH NETWORK

WFH World Bleeding Disorders Registry

The WFH World Bleeding Disorders Registry (WBDR) is a web-based data entry system that provides a platform for a network of hemophilia treatment centres (HTC) to collect uniform and standardized data on people with hemophilia. This registry will bring together privacy-protected patient data from countries around the world, storing it in one central location. The real-world data generated in the registry will be used to advance the understanding and care of people with hemophilia worldwide and support evidence-based advocacy initiatives. An accessible patient registry strengthens our capacity to diagnose, treat, and care for people living with hemophilia.

The success of the WBDR depends on the valuable contributions and support from HTCs, WFH national member organizations (NMO), and people with hemophilia from around the world. 

Learn how your contribution will enhance the WBDR:  

Hemophilia treatment centres 

Participating HTCs will be at the forefront of recruiting patients and entering confidential and anonymous patient data into the WBDR database. The WFH will work closely with all participating HTCs to help them obtain ethics approval at their local institution and provide training on all aspects of the registry via webinars, videos and in-person training.

WFH national member organizations

Our NMOs can help support the WBDR by providing valuable information on the organization of hemophilia care in their country. With the help of NMOs, the WFH will be identifying HTCs in each country to invite and participate in the WBDR. The country specific expertise of each of our NMOs will be sought on a continuous basis throughout the WBDR life-span. 

People with hemophilia

People with hemophilia, who are interested in participating in the WBDR, must be a patient at a participating HTC. Medical staff at the HTC will then provide detailed information about the WBDR. Each patient must provide consent to have their confidential and anonymous data entered into the registry. Participating in the registry means that data about the patient’s disease, such as hemophilia type and severity, symptoms and, treatment will be entered into the WBDR database. Only anonymous patient data will be entered into the WBDR database; no data that could identify a patient will be entered. Deciding on whether to participate in the WBDR is a personal choice of the patient. If a patient decides not to participate, they will continue to receive the same care as all other patients at their HTC.   

Financial supporters  

The generous contributions of our sponsors have allowed us to pilot test the WBDR in a smaller number of HTCs, and initiate the full scale registry. Organizations interested in supporting the WBDR are encouraged to contact us at wbdr@wfh.org.


Implementation

Implementation of the WBDR will begin in September 2017 and will follow these steps:

1. WFH national member organizations will receive an information letter from the WFH explaining the WBDR and asking for input on which HTCs in their country should be invited to participate in the WBDR.

2. Selected HTCs will receive an invitation from the WFH to participate in the WBDR. HTCs that are interested in participating must meet the minimal criteria outlined below:

  • HTCs must have access to internet to connect with the web-based data entry system
  • HTCs must have an identified person who can input confidential patient data in the registry
  • HTCs must be willing to enrol patients in the registry over the long-term and complete follow up questionnaires at each patient visit

3. HTCs who meet the criteria will be enrolled in the WBDR. These HTCs must obtain ethics approval from their local institution or ministry of health. The WFH will provide guidance on how to obtain this letter of ethics approval.

4. After the HTC receives the written ethics approval from their institution, they can start enrolling patients into the WBDR and inputting patient data. The WFH will provide training on patient recruitment, obtaining informed consent, entering data in the WBDR database, and other topics as needed.


Training

The WFH has a team dedicated to answering questions about the registry and providing support for WFH NMOs, HTCs, and people with hemophilia. Virtual, on-line, and in-person training will be available on all aspects of the WBDR, including:   

  • Obtaining ethics approval at your local institution
  • Recruiting patients and obtaining informed consent procedures 
  • Database entry procedures and quality data collection 

If your HTC is interested in participating in the WBDR, please email us to request the application procedure at wbdr@wfh.org.

Universal Case Report Form


Updated September 2017

The WFH Epidemiological Research Program is supported by funding from: