Background: There are currently fifteen HMORN sites that have a VDW tumor table. The VDW tumor specifications standardize this data. However, there is variation in each site’s cancer registry, and hence the types of data that can be accessed. Methods: During 2011 two metadata surveys have been sent out to the VDW implementation group. The participation rate has been over a dozen sites. The surveys ascertain each site’s registry source type, (internal local registry, external central registry, such as SEER, NPCR, State etc.), the type of software used at the registry, whether all patients are captured by the registry, whether NAACCR is used to format and populate VDW tumor, the table update frequency, and other factors.
Results:
• All responding sites populate their data by means of a cancer registry.
• All but two sites maintain their own facility registry. Just about half the respondents claimed to be a SEER site.
• Six sites use the NAACCR manual as a dictionary to aid the population of VDW tumor, four sites use the FORDS manual.
• Planned VDW Tumor file update schedules vary a great deal, from weekly to annually, with four sites each reporting annual and monthly update schedules.
• There is a diverse collection of software vendors used to collect cancer data at the registries.
• Geographic central registry coverage area may miss some patients treated for cancer at some sites.
Conclusion: It is instructive to understand the diversity in tumor data sources. Different central registry requirements dictate which fields are available to the site and may vary in content. While the data is standardized across sites by a common specification, there may still be nuances between sites; understanding the source data will help researchers and programmers navigate these nuances, and help shape requests for new fields or derivations.