Minimum Data Set

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S&RD Steering Committee Explores Minimum Data Set for Early Incidence Reporting

In 2022, the NAACCR Board of Directors identified a minimum dataset/partial records as one of its project-focused strategic priorities. In response, the Standardization and Registry Development Steering Committee (S&RD SC) convened the Minimum Data Set Task Force (TF) to define minimum data items required for early incidence reporting and to ensure cases can be included in a data submission to standard setters. In addition, the TF was to determine whether every data item within the minimum data set must have a known value. A report that recommended eleven data items to be considered for defining a standard minimum data set was submitted to the S&RD SC. This report has been forwarded to the NAACCR Board for their review and recommendation on next steps.

During early TF discussions, it became apparent that to reach the final objective, the group needed to first identify data elements available to central cancer registries as part of long-established reporting requirements. Thus, the TF took a step-wise approach:

  • Consider data items available to central cancer registries to process incidence data.
  • Identify minimum data set necessary to inform incidence.
  • Determine whether unknown values are acceptable for each item in the recommended minimum data set.
  • Record concerns, considerations, and recommendations described by members throughout the process.

Excluded from the project scope was the need to define processes related to registry operations, specific source types, quality control, or software development. However, the SC does realize that these exclusions are important to future phases and will be considered as next steps are determined.

Stay tuned as this exciting initiative moves forward!

Minimum Data Set Task Force Members:

  • April Austin (Co-chair), New York State Cancer Registry
  • Sean Porter (Co-chair), CDC-National Program of Cancer Registries
  • Madhu Behera, Emory University (Cancer Informatics Advisory Group member)
  • Brian Cahill, New Jersey State Cancer Registry
  • Maria Celaya, New Hampshire State Cancer Registry
  • Angela Eckstrand, Alberta Cancer Registry
  • Jennifer Hafterson, Fred Hutchinson Cancer Center
  • Lori Havener, NAACCR
  • Tiffany Janes, Fred Hutchinson Cancer Center
  • Michelle Lenzen, Arizona Cancer Registry
  • Shadi Masoud, American College of Surgeons
  • Christina McEachern, Pennsylvania Cancer Registry
  • Jamie Musco, New York State Cancer Registry
  • Jeremy Pine, California Cancer Registry
  • Recinda Sherman, NAACCR
  • Georgia Armenta Yee, Arizona Cancer Registry
  • Kyle Ziegler, Cancer Registry of Greater California
  • Heather Zimmerman, Montana Central Tumor Registry (Research and Data Use Steering Committee member)

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