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Table 1 Key data items and time-points

From: Improving outcomes for patients with lymphoma: design and development of the Australian and New Zealand Lymphoma and Related Diseases Registry

Key data entry time points

Data items collected

Baseline: Demographics and disease characteristics at diagnosis

Date of birth, sex, genetic ethnic heritage, pregnancy status

Height and weight

Medical history, including current comorbidities, previous malignancies, ECOG performance status

Family history of haematologic malignancy

WHO classification

disease stage

Molecular and cytogenetic abnormalities – Those judged to be of most prognostic value for a given diagnosis

Full blood count

Other laboratory fields relevant to prognostic indices

Quality of life (EQ-5D-5L)a

Samples tissue banked, if applicable

Therapy (Repeatable event to collect each line)

Planned therapy, including chemo-/immuno-/radiotherapy, haematopoietic stem cell transplantation (autologous/allogeneic), supportive care, participation in clinical trial (if applicable)

Delivered therapy, including commencement date and any variations to planned therapy

Response: Interim response and initial response

Reviews (6 and 12 months and annually thereafter or as required)

Vital status, date and cause of death if applicable

Relapse/progression, date of progression if appropriate

Loss to follow-up, date of last contact

  1. ECOG Eastern Cooperative Oncology Group, EQ-5D-5L EuroQol 5D 5-level QoL instrument, WHO World Health Organization, aEthics approval in place but currently not collected