Universal Case Report Forms (uCRFs)
| uCRF Module | Description | No. of pages |
|---|---|---|
| Hemophilia Treatment Centre (HTC) registration form | Used to register HTC in the registry database | 1 |
| Minimal Data Form (MDF) | Used to capture minimal data required for each patient. | 1 |
| SECTION 1.1: Demography and Diagnostic Information | Used to capture Demography and Diagnostic Information of each patient. | 3 |
| SECTION 1.2: Clinical Details at Diagnosis | Used to capture clinical details during diagnosis | 1 |
| SECTION 1.3: Bleeding and Factor Replacement Therapy | Used to capture bleeding and factor replacement therapy details | 3 |
| SECTION 1.4: Annual Follow-up Data | Used to capture annual follow-up information | 2 |
| SECTION 2.1.2: Haemophilia Joint Health Score (HJHS) | Used to capture HJHS score | 1 |
| SECTION 2.2.4: Functional Independence Score for Haemophilia (FISH) | Used to capture FISH score | 1 |
| End of Followup | Used to capture follow-up completion status | 1 |