World Federation of Hemophilia Creates Universal Case Report Form for Hemophilia Patients

The World Federation of Hemophilia (WFH) created the Universal Case Report Form (U-CRF) to collect and standardize data on relevant diagnosis, therapies, and outcomes for patients with hemophilia.

Previous WFH forms only provided an overview of the number of patients and access to treatment, and did not include information on how treatments were performed or on patient outcomes.

The form is meant to help hemophilia treatment centers (HTCs) provide more comprehensive data on patients, increase access to therapy, improve the quality of care, and enable the comparison of outcomes among different patient groups.

U-CRF is composed of three parts to account for differences in clinical practices at HTCs around the world:

  • Part 1: the Registration Form, which provides information on the location, contact and responsible personnel, and number of registered patients in each HTC
  • Part 2: the Minimal Data Set includes basic information such as patient demographics, diagnosis data at registration, annual follow-up with details of bleeding, chlorofluorocarbons replacement, and inhibitor status
  • Part 3: includes full details of the relevant parameters in patient outcome

View the report.

Source: WFH press release, September 2, 2016.