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 firstname.lastname@example.org.
The following are the set of forms that can comprehensively capture each patient’s data.