Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 Aug 1;2024(65):180-190.
doi: 10.1093/jncimonographs/lgae034.

NCI SEER-Linked Virtual Tissue Repository Pilot

Affiliations

NCI SEER-Linked Virtual Tissue Repository Pilot

Pamela Sanchez et al. J Natl Cancer Inst Monogr. .

Abstract

Background: The Surveillance, Epidemiology, and End Results (SEER) Program with the National Cancer Institute tested whether population-based cancer registries can serve as honest brokers to acquire tissue and data in the SEER-Linked Virtual Tissue Repository (VTR) Pilot.

Methods: We collected formalin-fixed, paraffin-embedded tissue and clinical data from patients with pancreatic ductal adenocarcinoma (PDAC) and breast cancer (BC) for two studies comparing cancer cases with highly unusual survival (≥5 years for PDAC and ≤30 months for BC) to pair-matched controls with usual survival (≤2 years for PDAC and ≥5 years for BC). Success was defined as the ability for registries to acquire tissue and data on cancer cases with highly unusual outcomes.

Results: Of 98 PDAC and 103 BC matched cases eligible for tissue collection, sources of attrition for tissue collection were tissue being unavailable, control paired with failed case, second control that was not requested, tumor necrosis ≥20%, and low tumor cellularity. In total, tissue meeting the study criteria was obtained for 70 (71%) PDAC and 74 (72%) BC matched cases. For patients with tissue received, clinical data completeness ranged from 59% for CA-19-9 after treatment to >95% for margin status, whether radiation therapy and chemotherapy were administered, and comorbidities.

Conclusions: The VTR Pilot demonstrated the feasibility of using SEER cancer registries as honest brokers to provide tissue and clinical data for secondary use in research. Studies using this program should oversample by 45% to 50% to obtain sufficient sample size and targeted population representation and involve subspecialty matter expert pathologists for tissue selection.

PubMed Disclaimer

Conflict of interest statement

The authors have no conflicts of interest to disclose.

Figures

Figure 1.
Figure 1.
SEER-Linked Virtual Tissue Repository (VTR) concept. As the future VTR Program is conceptualized, investigators may apply for access to a searchable, web-based interface with diagnoses, clinicopathologic information, demographic parameters, and treatment information. The Surveillance, Epidemiology, and End Results (SEER) registries will function as honest brokers to obtain diagnostic, formalin-fixed, paraffin-embedded (FFPE) tissue and clinical data and, in turn, provide deidentified, but linked, data and tissue for selected cancer cases ascertained through participating SEER registries. These VTRs will function in parallel with SEER-Linked Residual Tissue Repositories (RTRs) that collect archival, diagnostic FFPE tissue blocks and microscopic slides being discarded by laboratories, associated pathology reports, and SEER abstracts.
Figure 2.
Figure 2.
PDAC genomic study design.
Figure 3.
Figure 3.
BC genomic study design.
Figure 4.
Figure 4.
CONSORT flow chart of sources of attrition in tissue acquisition for the Pancreatic Ductal Adenocarcinoma Genomic Study.
Figure 5.
Figure 5.
CONSORT flow chart of sources of attrition in tissue acquisition for the Breast Cancer Genomic Study.

References

    1. US Food and Drug Administration. 2018 Drug Trials Snapshots Summary Report. https://www.fda.gov/media/120253/download. Published January 2019. Accessed April 29, 2024.
    1. Vespa J, Medina L, Armstrong DM. Demographic Turning Points for the United States: Population Projections for 2020 to 2060. https://www.census.gov/content/dam/Census/library/publications/2020/demo.... Published March 2018. Accessed April 29, 2024.
    1. Stewart JH, Bertoni AG, Staten JL, Levine EA, Gross CP. Participation in surgical oncology clinical trials: gender-, race/ethnicity-, and age-based disparities. Ann Surg Oncol. 2007;14(12):3328-3334. doi:10.1245/s10434-007-9500-y - DOI - PubMed
    1. Loree JM, Anand S, Dasari A, et al. Disparity of race reporting and representation in clinical trials leading to cancer drug approvals from 2008 to 2018. JAMA Oncol. 2019;5(10):e191870. doi:10.1001/jamaoncol.2019.1870 - DOI - PMC - PubMed
    1. Murthy VH, Krumholz HM, Gross CP. Participation in cancer clinical trials: race-, sex-, and age-based disparities. JAMA. 2004;291(22):2720-2726. doi:10.1001/jama.291.22.2720 - DOI - PubMed

MeSH terms