Table 1.
Data recorded on five registration forms used by the Danish National Leukemia Registry
| Registration form and time of registration | Variables |
|---|---|
| Registration form | Name, civil registration (CPR) number, and demographic data |
| At diagnosis | Diagnosis according to WHO (2008)/ICD-10 |
| From 2011 the cytogenetic details are included in a separate registration form | Date of diagnosis and date of first visit to a health care unit Prior hematological or solid cancer (specified, if present) Prior treatment with radio- or chemotherapy WHO Performance Status Score (WHO PS) Height and body weight Presence of extramedullary leukemia (EML) (specified, if present) FAB-type, blast percentage in the blood and bone marrow Results of cytogenetic evaluation (conventional cytogenetics and FiSH) Leucocyte and platelet counts and level of lactate dehydrogenase (LDH) Planned chemotherapy (yes/no) Date of initiated treatment/decision of “no treatment” |
| Treatment registration form | Treatment intent (palliative or curative) |
| After completed first treatment | Date of first initiation of treatment |
| Only completed in chemotherapy treated patients | Protocol inclusion (yes, no and specified) For each cycle of combination chemotherapy, if given: Date of initiation, type and dose Classification of bone marrow response Date of evaluation |
| Relapse registration form | Date of relapse |
| At relapse | Treatment intent (palliative or curative) |
| If chemotherapy is initiated the registration form is filed after completion | For each cycle of combination chemotherapy, if given: Date of initiation, type and dose Classification of bone marrow response Date of evaluation |
| Transplantation registration form | Date of transplantation |
| In case of bone marrow transplantation | Type of transplantation (myeloablative, reduced intensity conditioning, or autologous) Donor type (sibling/registry) Type of transplant (bone marrow/peripheral stem cells) |
| Follow up registration form | Status (dead/alive) |
| At death or termination of follow up as an outpatient | Date of death Cause of death |
Abbreviations: ICD, International Classification of Diseases; FISH, fluorescence in situ hybridization; WHO, World Health Organization; FAB, French-American-British.