Evaluation of Cancer Cases Reported through Inter-Registry Data Exchange in New York State

Inter-Registry Data Exchange (IRDE) is crucial for central cancer registries. It allows registries to share data across states or territories to increase accuracy and completeness of case reporting. To evaluate the data exchanged through IRDE at the New York State Cancer Registry (NYSCR), we conducted a descriptive study using the most recent 5 years of data.

We selected all invasive (and in situ bladder) cancer cases diagnosed during 2018-2022 and reported to NYSCR. Cancer cases were categorized into two groups based on the patient's address at diagnosis: New York (NY) cases and non-NY cases. NY cases were further divided according to their reporting sources: those reported by NY facilities, through IRDE only, or both. We calculated percentages of reported cases by state of residency and reporting source. We also examined patient demographics and clinical characteristics for each reporting source category and assessed the percentage of NY cases that were reported solely through IRDE by county.

In total, the NYSCR sent 83,438 records to other state registries and received 16,964 records. Overall, 13.0% of all reportable invasive cancer cases reported to NYSCR were non-NY cases, with 94.3% of those patients from states that have an IRDE agreement with NY. Even though only 0.8% of NY cases were reported exclusively through IRDE, the percentage varied considerably by county (ranging from 0.1-14.8%), with higher percentages for counties bordering neighboring states, such as Tioga County. Compared to NY cases, patients in non-NY cases reported to NYSCR were more likely to be in younger age groups or non-Hispanic and less likely to be Black or insured with Medicaid.

IRDE is an important part of cancer registry operations. This descriptive evaluation allows us to have a better understanding of the case load of IRDE and its impact on case completeness in NYSCR, which could potentially help prioritize our work and efforts. The results presented in this study could also be informative for other registries. Through collaboration, all registries could benefit from IRDE, ultimately achieving more accurate and complete case reporting.