Data Set

The outcomes data items describe the known clinical and vital status of the patient. The following data items are required and should reflect the most recent information available to the registry that originates from reported patient hospitalizations, known patient readmissions, contact with the patient’s physician, and/or direct contact with the patient.

  • Date of last contact or death
  • Vital status
  • Date of Last Cancer (tumor) Status (*STORE  Manual)
  • Date of Last Cancer (Tumor) Status Flag
  • Cancer status
  • Date of first recurrence
  • Type of first recurrence
  • Following registry
  • Follow-up source

* In order to facilitate research on cancer recurrence, two new follow-up data items have been added for 2018 that allow for the recording of the last date on which the patient’s cancer status has been updated. These new data items are tumor-specific to better document tumor recurrence/no evidence of disease (NED).

A Patient Outcomes Flow Chart. 1. Follow up data items: 1a) Date of last contact/follow up (yyyy/mm/dd): a) cancer status (since last follow up) no evidence of disease, evidence of disease, or unknown. b) recurrence: b1) Yes: date and type of recurrence (after review, refer to fields in registry software to enter correct code) or b2) No: date field left blank. 1b) Vital status/patient status: a) patient alive or deceased.

Figure 1. Patient Outcomes Flow Chart. Source: Jalyn L. Walker, National Cancer Institute

Updated: December 11, 2023