Abstract
Background North American Association of Central Cancer Registries (NAACCR) was established in 1987 as a collaborative organization for cancer registries, government agencies, professional associations and private groups. NAACCR develops and promotes uniform data standards, provides education and training, certifies population-based registries, processes and publishes data from central registries and promotes the use of cancer surveillance data for research, public health and patient care. Cancer registries in the US include the national central registries, NCI-SEER and CDC-NPCR, individual State registries and hospital-based (care provider-based) registries. The Cancer Research Network (CRN) has adopted NAACCR data standards to define the Virtual Data Warehouse tumor registry table (VDW-TR). However, since the inception of the VDW-TR, there have been many version of NAACCR in effect.
Aims/Methods VDW-TR needed to have similar and merge-able data for multi-site projects. Data standards set by NAACCR are optimal for construction of this resource as they are designed to collect tumor data centrally from multiple data sources. The standards establish processes for data exchange and record layout in addition to coordinating input from sponsoring organizations, such as AJCC and NCI. NAACCR is also responsible for incorporating new items of interest as the data used to characterize cancers evolve. We describe how these changes were incorporated into the VDW-TR.
Results AJCC Collaborative Stage I (CS-1), applicable to cases diagnosed beginning with January 2004, brought many changes to data and data formats required for staging. These changes were not incorporated by the VDW tumor file in 2004 due to the lack of ownership and oversight. Discrepancies eventually developed between VDW data dictionary and NAACCR causing data value decay. ICDO-2 histology lists were expanded and recoded in ICDO-3, providing additional challenges, along with other rules-based changes in tumor classification. CS-1 also mandated addition of anatomic site specific factors. Many additional changes occurred in 2010 with CS-2. The specifications incorporated in our current VDW-TR address all of these data changes.
Conclusion The VDW has to adopt NAACCR changes as they are adapted to remain current with all standards. We are now sensitized to monitor and adjust for significant future changes in NAACCR.
