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Universal Case Report Form

This Universal Case Report Form (U-CRF) is a comprehensive data collection form, developed with the aim of setting a standard of ideal clinical measures to collect on people with hemophilia. The U-CRF captures patient data over time, following the patient's clinical course from diagnosis, to each follow up visit. Using this U-CRF, Hemophilia Treatment Centres (HTCs) around the world will be able to systematically and consistently collect data and contribute to advancing the evidence on hemophilia at a global level. This will ultimately lead to better hemophilia care around the world.

The U-CRF is available on the WFH website for HTCs who are interested in collecting patient data for their own purposes. The advantage of using the WFH U-CRF is that the fields have been selected based on published recommendations and definitions, by consensus of internationally recognized experts in the field of bleeding disorders. It is modular in nature, allowing centre directors to complete the modules most useful to them at the time. The modules are divided as follows: 

  1. Registration Form: Includes the collection of contact data for the HTC and data on the prevalence of all bleeding disorders at the centre;
  2. Minimal Data Set (MDS): Includes the collection of a limited amount of data on patients, for sites unable to complete the entire U-CRF; and
  3. Sections 1.1 to 2.3.3 + End of Follow up: These modules make up the detailed and comprehensive U-CRF, which allow HTCs to document all relevant outcomes in full detail. These modules capture data on patient, disease and treatment outcomes; validated outcome assessment tools; and reason for end of follow up, including mortality data. 

This U-CRF is made available on this website for use by any treatment centers that would like to collect patient data, regardless of whether they participate in the World Bleeding Disorder Registry or not. Instructions on how to complete the U-CRF are found in the supporting document section.

Universal Case Report Form (U-CRF)

Supporting Document

U-CRF Completion Instructions


By Modules

Hemophilia Treatment Center Registration Form
Minimal Data Set (MDS)
Section 1.1 Demography & Diagnostic Information
Section 1.2 Clinical Details at Diagnosis
Section 1.3 Bleeding & Factor Replacement Therapy
Section 1.4 Annual Follow Up Data
Section 1.5 Range of Motion and Joint Disease
Section 2.1.1 Joint Score Clinical – WFH Score
Section 2.1.2 Joint Score Clinical – Haemophilia Joint Health Score (HJHS) 
Section 2.2.1 Haemophilia Activities List (HAL)
Section 2.2.2 PedHAL – Children & Teenager Version
Section 2.2.3 PedHAL – Child & Parent Version 
Section 2.2.4 Functional Independence Score for Haemophilia (FISH)
Section 2.3.1 Plain X-Ray
Section 2.3.2 Magnetic Resonance Imaging (MRI)
Section 2.3.3 Ultrasound 
End of Follow Up
Appendix: Section 2.2.1 HAL Scoring System
Appendix: Section 2.2.3 Key to FISH Scoring

Acknowledgments

The Universal Case Report Form (U-CRF) was developed with contributions from Margareth Castro Ozelo, Alfonso Iorio, Michael Makris, Flora Peyvandi, Michael Soucie, Alok Srivastava, and Marijke van den Berg.

For any questions or comments regarding the U-CRF, please email research@wfh.org.


Updated February 2017

The WFH Epidemiological Research Program is supported by funding from: