Data sources

Data on individuals in the patient cohort are collected from multiple sources. This includes laboratory data from HMDS, clinical data from medical records and national administrative data on mortality, cancer registrations and Hospital Episode Statistics (HES). Self-reported information from patients is also collected via questionnaires and interviews.

The type of data available varies for different diagnostic groups. An overview of data collected for individual diagnoses is provided in Factsheets and example data collection forms and our data dictionary are provided in Resources.

 Laboratory data

• Initial diagnosis
  • Histology, cytology, immunohistochemistry, molecular cytogenetics, mutational analysis, flow cytometry and gene expression profiling
• Ongoing monitoring
  • Disease progressions and transformations, response to treatment

Clinical data

• Antecedent or concurrent events
  • Previous cancers and relevant disorders (such as autoimmune conditions) and prior treatment with chemotherapy/radiotherapy
• Presentation data
  • Blood count data (including haemoglobin, total white blood cells, monocytes, lymphocytes, neutrophils, platelets and packed cell volume)
  • Performance status (ECOG)
• Treatment
  • Disease management (including watch and wait, supportive care, radiotherapy and chemotherapy regimen)
  • Start and end dates
  • Response to treatment (also assessed through laboratory data)

Disease involvement

Additional data collected for certain diagnoses include site(s) of disease involvement (illustrated below); detected through clinical examination, scanning (CT, PET, MRI) and/or bone marrow assessment. Along with results of other tests, this information is used to calculate cancer stage, for example the Ann-Arbor classification system for lymphomas and Binet for chronic lymphocytic leukaemia.

In conditions such as lymphoma, disease involvement is separated into nodal (involving the lymph nodes or other parts of the lymphatic system) and extra-nodal (involving tissues or organs outside of the lymphatic system).  It is further classified according to whether disease is present above and/or below the diaphragm, with sites in both areas indicating more advanced stage. Click the boxes below to highlight each location.