Evidence map›Paper›PMID 39102879›Full record

ArticleJournal of the National Cancer Institute. Monographs2024

Virtual Pooled Registry-Cancer Linkage System: an improved method for ascertaining cancer diagnoses.

Dennis Deapen, Castine Clerkin, William Howe, Don Green, Christopher J Johnson, Betsy A Kohler, Annelie M Landgren, Anca Preda, Joanne Elena, Lynne Penberthy

Abstract read
In one paragraph

Article in Journal of the National Cancer Institute. Monographs, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. NCI-Funded Cancer Epidemiology Survivor Cohorts: Overview, Progress, and Opportunities.Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology · 2025
    Article
  2. Article
  3. The SEER Program's evolution: supporting clinically meaningful population-level research.Journal of the National Cancer Institute. Monographs · 2024
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Dennis DeapenUniversity of Southern California, Los Angeles, CA, USA.ORCID 0000-0002-0037-0277
Castine ClerkinNorth American Association of Central Cancer Registries, Springfield, IL, USA.
William HoweInformation Management Services, Inc, Rockville, MD, USA.
Don GreenInformation Management Services, Inc, Rockville, MD, USA.
Christopher J JohnsonCancer Data Registry of Idaho, Boise, ID, USA.ORCID 0000-0003-0730-0877
Betsy A KohlerNorth American Association of Central Cancer Registries, Springfield, IL, USA.
Annelie M LandgrenNational Cancer Institute, Rockville, MD, USA.
Anca PredaNational Cancer Institute, Rockville, MD, USA.
Joanne ElenaNational Cancer Institute, Rockville, MD, USA.
Lynne PenberthyNational Cancer Institute, Rockville, MD, USA.

Funding

VIRTUAL POOLED REGISTRY (VPR) PROJECT75N91021D00018 · NCI · NORTH AMERICAN ASSN/CENTRAL CANCER REG · PI KOHLER, BETSY · 2021 to 2025
$12.6M
PREPARATION AND CHARACTERIZATION OF FIVE VACCINE CANDIDATES75N93021D00018 · NIAID · CHARLES RIVER LABORATORIES INTNTL, INC. · PI VACHON, TRACY · 2025 to 2025
$4.7M
NCI NIH HHSNIAID NIH HHS 75N93021D00018NIH HHS 75N91021D00018NIH HHS 75N98021D00018North American Association of Central Cancer RegistriesORFDO NIH HHS 75N99021D00018
6 · The paper itself

Abstract

backgroundThe National Cancer Institute funds many large cohort studies that rely on self-reported cancer data requiring medical record validation. This is labor intensive, costly, and prone to underreporting or misreporting of cancer and disparity-related differential response. US population-based central cancer registries identify incident cancer within their catchment area, yielding all malignant neoplasms and benign brain and central nervous system tumors with standardized data fields. This manuscript describes the development, implementation, and features of a system to facilitate linkage between cohort studies and cancer registries and the release of cancer registry data for matched cohort participants.

methodsThe Virtual Pooled Registry-Cancer Linkage System (VPR-CLS) provides an online system to link cohorts with multiple state cancer registries by 1) securely transmitting a study file to registries, 2) providing an optimized linkage algorithm to generate preliminary match counts, and 3) providing a streamlined process and templated forms for submitting and tracking data requests for cohort participants who matched with registries.

resultsIn 2022, the VPR-CLS launched with 45 registries, covering 95% of the US state populations and Puerto Rico. Registries have linked with 15 studies having 14 273-10.9 million participants. Except in 1 study, linkage sensitivity ranged from 87.0% to 99.9%. Numerous registries have adopted the VPR-CLS templated institutional review board-registry application (n = 39), templated data use agreement (n = 25), and central institutional review board (n = 16).

conclusionsThe VPR-CLS markedly improves ascertainment of cancer outcomes and is the preferred approach for determination of outcomes from cohort studies, postmarketing surveillance, and clinical trials.

Indexed as

Medical Record LinkageNeoplasmsRegistriesCohort StudiesHumansNational Cancer Institute (U.S.)United States

Identifiers

PMID39102879
PMCPMC11300027

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.