NTRNTR

Blood/Marrow Transplant Blood/Marrow Transplant RegistryRegistry

IntroIntro

►Malaysian Bone Marrow Transplant Malaysian Bone Marrow Transplant Recipient Registry was created on 16 Recipient Registry was created on 16 February 1998 February 1998

► Paediatrics Department UH Paediatrics Department UH Paediatrics Insitute HKL Paediatrics Insitute HKL Dept of Medicine UH (Haematology division) Dept of Medicine UH (Haematology division) Subang Jaya Medical Centre Subang Jaya Medical Centre Hospital Kuala Lumpur (Haematology Hospital Kuala Lumpur (Haematology Division) Division) Hospital UKM Hospital UKM

IntroIntro

►Merged existing databasesMerged existing databases►Decided to record and maintain Decided to record and maintain

transplant data onlinetransplant data online►32 fields32 fields►578 records to date578 records to date

NTR UpdateNTR Update

►Take opportunity to overhaul database Take opportunity to overhaul database – add/delete/modify fields– add/delete/modify fields

► Combined the “common” and BMT Combined the “common” and BMT data forms into one – for reporting at data forms into one – for reporting at day 30 post-transplantationday 30 post-transplantation

►Main Reporting Form Main Reporting Form FieldsFields►Update (ad hoc events) Form Update (ad hoc events) Form FieldsFields

NTR requirementsNTR requirements

►Entirely online submission of data via Entirely online submission of data via Web based entryWeb based entry

►Use of drop down boxes, check boxes, Use of drop down boxes, check boxes, radio buttons etc to speed up entryradio buttons etc to speed up entry

►SDPs must be able to access data SDPs must be able to access data submitted for editingsubmitted for editing

►SDPs must be able to access SDPs must be able to access real-timereal-time aggregate data for the HSC Transplant aggregate data for the HSC Transplant registry:registry:

NTR requirementsNTR requirements

►Totals (by centre, diagnosis, type of Totals (by centre, diagnosis, type of transplant, transplant source, sex, transplant, transplant source, sex, ethnic group, age ranges) and cross-ethnic group, age ranges) and cross-tabstabs

►Totals by year of transplant (real time Totals by year of transplant (real time graphs)graphs)

►Real-time or periodic (e.g. quarterly) Real-time or periodic (e.g. quarterly) KM survival analyses (total, by disease, KM survival analyses (total, by disease, DFS/RFS)DFS/RFS)

NTR fast trackNTR fast track

►Getting started ASAPGetting started ASAP►Commence new registry ASAP utilizing Commence new registry ASAP utilizing

new database structurenew database structure►Begin entering new data online ASAPBegin entering new data online ASAP►Update existing data before merging Update existing data before merging

into new data (need to liaise with into new data (need to liaise with individual SDPs)individual SDPs)