UNASSIGNED: Central cancer registries are responsible for managing appropriate research contacts and record releases. Do not contact (DNC) flags are used by some registries to indicate patients who should not be contacted or included in research. Longitudinal changes in DNC coding practices and definitions may result in a lack of code standardization and inaccurately include or exclude individuals from research.
UNASSIGNED: We performed a comprehensive manual review of DNC cases in the Utah Cancer Registry to inform updates to standardization of DNC code definitions, and use of DNC codes for exclusion/inclusion in research.
UNASSIGNED: We identified 858 cases with a current or prior DNC flag in the SEER Data Management System (SEER*DMS) or a research database, with cancers diagnosed from 1957-2021. We reviewed scanned images of correspondence with cases and physicians, incident forms, and comments in SEER*DMS and research databases. We evaluated whether there was evidence to support the current DNC code, a different DNC code, or insufficient evidence for any code.
UNASSIGNED: Of the 755 cases that had a current DNC flag and reason code in SEER*DMS, the distribution was as follows: 58%, Patient requested no contact; 20%, Physician denied; 13%, Patient is not aware they have cancer; 4%, Patient is mentally disabled [sic]; 4%, Other; and 1%, Unknown. In 5% of these cases, we found evidence supporting a different DNC reason code. Among cases included because of a prior DNC flag in SEER*DMS (n = 10) or a DNC flag in a research database (ie, cases with no current DNC flag or reason code in SEER*DMS, n = 93), we found evidence supporting the addition of a SEER*DMS DNC flag and reason code in 50% and 40% of cases, respectively. We identified DNC reason codes with outdated terminology (Patient is mentally disabled) and codes that may not accurately reflect patient research preferences (Physician denied without asking the patient). To address this, we identified new reason codes, retired old reason codes, and updated current reason code definitions and research handlings.
UNASSIGNED: The time and resource investment in manual review allowed us to identify and, in most cases, resolve discordance in DNC flags and reason codes, adding reason codes when they were missing. This process was valuable because it informed recommended changes to DNC code definitions and research handlings that will ensure more appropriate inclusion and exclusion of cancer cases in research.

When a cancer case is diagnosed or treated in one US state, but the patient resides in another, the case report abstract is shared with the central cancer registry in the state of residence through interstate data exchange. However, the records shared may not include pathology reports. Cases diagnosed in another state that would be ascertained only from pathology reports may thus be missed. Utah Cancer Registry received many electronic pathology (e-path) records for nonresident cases that were not being shared. In 2019, Utah Cancer Registry implemented workflow changes and created a novel data extract process to share e-path records in a North American Association of Central Cancer Registries (NAACCR) HL7 format. Utah Cancer Registry shared e-path records for an estimated 2,773 cases with other states for the diagnosis year 2018. Of these cases, both an e-path record and NAACCR-format abstract were shared for 1,709 (61.6%), whereas e-path record only was shared for 1,064 (38.4%). The largest number of e-path records went to 2 adjacent states: Idaho (n = 1,084) and Wyoming (n = 621). Receiving registries reported success importing the files. The e-path data stream resulted in ascertainment of 96 new cases for Idaho and 89 for Wyoming for diagnosis year 2018. Whereas most shared e-path records represented cases already known to the receiving registry, registry staff provided feedback that it was beneficial to obtain the additional documentation. Linking and reviewing the shared e-path records did represent additional workload. Central cancer registries can adopt this process for sharing e-path records via interstate data exchange to support complete case ascertainment in collaborating states.

Large temporal and geographical variation in survival rates estimated from epidemiological cancer registries coupled with heterogeneity in death certificate only (DCO) notifications makes it difficult to interpret trends in survival. The aim of our study is to introduce a method for estimating such trends while accounting for heterogeneity in DCO notifications in a cancer site-specific manner.
We used the data of 4.0 million cancer cases notified in 14 German epidemiological cancer registries. Annual 5-year relative survival rates from 2002 through 2013 were estimated, and proportions of DCO notifications were recorded. \"DCO-excluded\" survival rates were regressed on DCO proportions and calendar years using a mixed linear model with cancer registry as a random effect. Based on this model, trends in survival rates were estimated for Germany at 0% DCO.
For most cancer sites and age groups, we estimated significant positive trends in survival. Age-standardized survival for all cancers combined increased by 7.1% units for women and 10.8% units for men.
The described method could be used to estimate trends in cancer survival based on the data from epidemiological cancer registries with differing DCO proportions and with changing DCO proportions over time.

BACKGROUND: Ascertaining incident cancers is a critical component of cancer-focused epidemiologic cohorts and of cancer prevention trials. Potential methods: for cancer case ascertainment include active follow-up and passive linkage with state cancer registries. Here we compare the two approaches in a large cancer screening trial.
METHODS: The Prostate, Lung, Colorectal and Ovarian (PLCO) cancer screening trial enrolled 154,955 subjects at ten U.S. centers and followed them for all-cancer incidence. Cancers were ascertained by an active follow-up process involving annual questionnaires, retrieval of records and medical record abstracting to ascertain and confirm cancers. For a subset of centers, linkage with state cancer registries was also performed. We assessed the agreement of the two methods in ascertaining incident cancers from 1993 to 2009 in 80,083 subjects from six PLCO centers where cancers were ascertained both by active follow-up and through linkages with 14 state registries.
RESULTS: The ratio (times 100) of confirmed cases ascertained by registry linkage compared to active follow-up was 96.4 (95% CI: 95.1-98.2). Of cancers ascertained by either method, 86.6% and 83.5% were identified by active follow-up and by registry linkage, respectively. Of cancers missed by active follow-up, 30% were after subjects were lost to follow-up and 16% were reported but could not be confirmed. Of cancers missed by the registries, 27% were not sent to the state registry of the subject\'s current address at the time of linkage.
CONCLUSIONS: Linkage with state registries identified a similar number of cancers as active follow-up and can be a cost-effective method to ascertain incident cancers in a large cohort.

Melanoma is often managed outside hospital settings, creating the potential for underreporting to cancer registries. To our knowledge, completeness of melanoma capture in cancer registries has not been assessed using external data sources since the 1980s. We evaluated the melanoma capture rate from 1993 to 2009 in a provincial cancer registry. We identified all melanoma diagnoses in pathology reports from a major community laboratory in Ontario, Canada. Pathologically confirmed diagnoses were linked to Ontario Cancer Registry (OCR) records using health insurance numbers. We calculated capture rates as the proportion of patients with melanoma confirmed by a pathology report, with a corresponding melanoma diagnosis in OCR. OCR captured 3,798 of 4,275 (88.8, 95 % confidence interval: 87.9, 89.8 %) invasive melanoma diagnoses over the 17-year period. Annual capture rates of 94 % or higher were found for over half the study period. Among all 29,133 melanoma diagnoses in OCR, 27.6 % were registered based on a pathology report alone, compared with 3.4 % for non-cutaneous malignancies. This suggests that comprehensive capture of melanoma cases by a provincial cancer registry is achievable using source data from community laboratories. There is a need for ongoing validation to ensure data remain accurate and complete to reliably inform clinical care, research, and policy.