Table 3 Key Data Entry Time Points and Data Items
From: Design and development of the Australian and New Zealand (ANZ) myeloma and related diseases registry
Key Data Entry Time Points | Data items collected: |
|---|---|
Baseline demographics at diagnosis | • Health at diagnosis • Demographic Details • Laboratory and imaging results at diagnosis |
Changes in treatment regimen | • Therapy decisions including including pre therapy benchmarking, chemotherapy, autologous stem cell transplants, allogeneic stem cell transplants and maintenance and supportive therapy |
Treatment regimen dates | • Commencement and completion for each agent/therapy |
Progression or disease relapse | • Myeloma markers as per IMWG criteria • Date of disease progression or relapse |
Treatment response | • Response as per IMWG criteria • Outcomes (overall and progression free survival, duration of response and time to next treatment and quality of life measures – EQ-5D-5L) |
Date (and cause) of death | • Long-term outcomes (through linkage with Cancer and Death Registries). |