Call for data

Participants

This project allows the participating registries to:

  • Contribute to an updated global picture of cancer incidence in children and adolescents, and thus provide background for etiological studies and public health decision-makers;
  • Verify whether their data meet with international quality standards and improve them if necessary;
  • Increase the visibility of their registry in their country and worldwide.

The cancers of interest to the IICC-3 project are rare. Large international studies are therefore required to produce meaningful results. The Editors aim to include as many high-quality datasets as possible, so as to represent the worldwide variety in underlying incidence rates as fully as possible. They welcome discussion with the participating registries. At the end of the process, the selected registries will be presented in an authored chapter within the monograph.

An invitation to join the study was sent to potential contributors identified by the Editors. However, spontaneous contributions were also welcome.

To participate in IICC-3, all of the following conditions were required:

  • The registry was committed to collaboration
  • The registry was eligible
  • All requested material was submitted in due time
  • The registry collaborated actively in the process of data validation
  • The registry examined its data according to any comments raised by the Editors and addressed them
  • The dataset was included in the publication.

Commitment

The head of the registry or a delegated responsible contact person for the study agreed with active participation in the study and with having tabulated data from their registry published in the IICC-3 monograph and on a dedicated website. All material to be published was made available for review and feedback by the registry prior to publication.

Eligibility

A registry was eligible for participation if:

  • It was a member of International Association of Cancer Registries
  • It could provide population-based data for the age group and period requested
  • The submitted dataset contained a reasonable number of cases
  • Histology of the cancers was available
  • Data were coded according to international systems
  • Data were submitted on electronic media.

Submission

The participants had to submit their data by the end of 2011.
Data submission consisted of:

  • A file with individual records of cancer registrations in patients aged 0-19 or 0-14 years at the date of incidence over the specified study period (see Requirements)
  • A file with tabulated data for the underlying population at risk (see Requirements)
  • A questionnaire on registry and registration techniques, completed online
  • Text summarizing information about the registry with specific notes about the study period, to be published in the monograph along with the data (see Requirements)

Data validation

The data received from the registry were checked at IARC. The questions raised about some records were promptly examined by the registry, which corrected or confirmed the records. Often, this required one or several resubmissions.

Comments by the Editors

During their meetings, the Editors raised questions about various aspects of the submitted data. The registries were asked to examine such questions and respond to them. An absence of a satisfactory explanation or correction may have resulted in exclusion from the publication. The Editors sometimes applied selective exclusion of, for example, the earliest or latest year(s) of data, because of suspected over- or under-registration. Depending on the nature and importance of their comments, the Editors may include them in a separate paragraph within the registry-specific chapter of the monograph.

Inclusion in publication

Only the datasets satisfying a number of standards formulated by the Editors were accepted for publication.

Registries with small numbers of cases were pooled together in a larger dataset to provide meaningful incidence estimates for larger regions or a country.

The Editors endeavoured to include as many datasets as possible in the monograph, while ensuring that the published data are of good quality and comparable. They worked towards this goal with the aid of their colleagues from cancer registries.