IAHAD recognizes the importance of maintaining a registry by the Haemophilia Treatment Centres to collect uniform and standardized patient data. In the context of India, we believe that it should be done at the state level.

Adapted to the local context, IAHAD has developed a set of Universal Case Report Forms (uCRFs) which can be used uniformly by all the centres. These forms are adapted from the WBDR owned by the World Federation of Hemophilia.

IAHAD is open to assist any state to set up the registry system at the local level. If any state would like the expertise guidance of IAHAD, kindly connect with us through our Program Manager at pm@iahad.org.

The following are the set of forms that can comprehensively capture each patient’s data.

Forms Description Frequency No. of pages Download
Haemophilia Treatment Centre (HTC) Details Used to register the details of the HTC at the time of initiation. At the one time of initiation and periodic update. 1 PDF
Minimal Data Form (MDF)
  • Used to capture minimal data required for each patient.
  • *You may skip the MDF if you are filling the Section 3.
  • ** MDF is the mandatory and minimal data that a HTC should have of a patient.
 At the one time of registration.
And at each annual visit.		 1 PDF
Section 3.1: Demography and Diagnostic Information Used to capture the demography and diagnostic information of each patient. At the one time of first visit/ diagnosis 3 PDF
Section 3.2: Clinical Details at Diagnosis Used to capture the clinical details during diagnosis. At the one time of first visit/ diagnosis. 1 PDF
Section 3.3: Bleeding and Factor Replacement Therapy Used to capture bleeding and factor replacement therapy details. At the one time of first visit/ diagnosis.
At each visit/ annual visit.		 3 PDF
Section 3.4: Annual Follow-Up Data Used to capture annual followup information. At each annual visit 2 PDF
Section 4.1: Haemophilia Joint Health Score (HJHS) Used to capture HJHS Score At the one time of first visit/ diagnosis.
Periodic assessment		 1 PDF
Section 4.2: Functional Independence Score for Haemophilia (FISH) Used to capture FISH Score. At the one time of first visit/ diagnosis.
Periodic assessment		 1 PDF
End of Follow Up Used to capture followup completion status. 1 PDF