The ICCR cancer datasets are developed under a quality framework which dictates both how the datasets look as well as what should be included. Each dataset has been developed by an international panel, the Dataset Authoring Committee (DAC), and includes Core and Non-core elements. The roles and responsibilities of the DAC and others in the dataset development process are outlined in Roles and Responsibilities for the ICCR dataset development process.
Core elements are those which are essential for the clinical management, staging or prognosis of the cancer. These elements will either have evidentiary support at Level III-2 or above, based on prognostic factors in the National Health and Medical Research Council (NHMRC) levels of evidence document below:
From: Merlin T, Weston A, Tooher R. Extending an evidence hierarchy to include topics other than treatment: revising the Australian ‘levels of evidence’. BMC Medical Research Methodology, 2009.
In rare circumstances, where level III-2 evidence is not available an element may be Core where there is unanimous agreement in the DAC. An appropriate staging system eg Pathological TNM staging would normally be included as a Core element.
Non-core elements are those which are unanimously agreed should be included in the dataset but are not supported by level III‐2 evidence. These elements may be clinically important and recommended as good practice but are not yet validated or regularly used in patient management.
The dataset development process is outlined in the Guidelines for the Development of ICCR Datasets document and in the figure below:
To ensure a consistent approach to the content of ICCR datasets, terms and their recommended usage have been defined and are available in the ICCR Harmonisation Guidelines.
These two documents will be updated periodically in order to maintain currency and to take advantage of improvements in process and agreement in terminology that will be achieved as the collaborative process progresses.
There is a close interdependency between cancer reporting datasets and the World Health Organization (WHO) Classification of Tumours ‘Blue books’, and therefore the ICCR has made a commitment to publish datasets in synchrony with the WHO updates. Therefore, new datasets will generally be developed in synchrony with the WHO updates, however, changes to other dependent publications such as TNM or FIGO staging will also trigger development of new datasets. Additional datasets may be scheduled for development if a specific need arises and resources are available.
Updates to datasets
Datasets will be scheduled for review and possible revision every 3 years at a minimum. Updates before the date of formal review may also be undertaken as a result of errors, changes to dependent publications such as the WHO classification of tumours or staging systems e.g. FIGO, AJCC, UICC, or significant changes in clinical or diagnostic evidence or management related to a specific cancer for example.
The process of updating ICCR Datasets is described in the Guidelines for the Development of ICCR Datasets document.