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
. 2022 Feb 25;22(1):209.
doi: 10.1186/s12885-022-09252-6.

The Kaiser Permanente Research Bank Cancer Cohort: a collaborative resource to improve cancer care and survivorship

Heather Spencer Feigelson  1 , Christina L Clarke  2 , Stephen K Van Den Eeden  3 , Sheila Weinmann  4 , Andrea N Burnett-Hartman  2 , Sarah Rowell  5 , Shauna Goldberg Scott  2 , Larissa L White  2 , Monica Ter-Minassian  6 , Stacey A A Honda  7 , Deborah R Young  8 , Aruna Kamineni  9 , Terrence Chinn  3 , Alexander Lituev  10 , Alan Bauck  4 , Elizabeth A McGlynn  11
Affiliations

The Kaiser Permanente Research Bank Cancer Cohort: a collaborative resource to improve cancer care and survivorship

Heather Spencer Feigelson et al. BMC Cancer. .

Abstract

Background: The Kaiser Permanente Research Bank (KPRB) is collecting biospecimens and surveys linked to electronic health records (EHR) from approximately 400,000 adult KP members. Within the KPRB, we developed a Cancer Cohort to address issues related to cancer survival, and to understand how genetic, lifestyle and environmental factors impact cancer treatment, treatment sequelae, and prognosis. We describe the Cancer Cohort design and implementation, describe cohort characteristics after 5 years of enrollment, and discuss future directions.

Methods: Cancer cases are identified using rapid case ascertainment algorithms, linkage to regional or central tumor registries, and direct outreach to KP members with a history of cancer. Enrollment is primarily through email invitation. Participants complete a consent form, survey, and donate a blood or saliva sample. All cancer types are included.

Results: As of December 31, 2020, the cohort included 65,225 cases (56% female, 44% male) verified in tumor registries. The largest group was diagnosed between 60 and 69 years of age (31%) and are non-Hispanic White (83%); however, 10,076 (16%) were diagnosed at ages 18-49 years, 4208 (7%) are Hispanic, 3393 (5%) are Asian, and 2389 (4%) are Black. The median survival time is 14 years. Biospecimens are available on 98% of the cohort.

Conclusions: The KPRB Cancer Cohort is designed to improve our understanding of treatment efficacy and factors that contribute to long-term cancer survival. The cohort's diversity - with respect to age, race/ethnicity and geographic location - will facilitate research on factors that contribute to cancer survival disparities.

Keywords: Cancer; Cohort study; Disparities; Genetic; Survivorship.

PubMed Disclaimer

Conflict of interest statement

The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
Diagram of the Rapid Case Ascertainment Process. Rapid Case Ascertainment (RCA) process uses pathology data to identity new cancer cases within days of diagnosis. Probable cancer cases are adjudicated using linkage to the tumor registry data in each Kaiser Permanente region. Abbreviations: DCC: Data Coordinating Center; IRB: Institutional Review Board; MRN: Medical Record Number
Fig. 2
Fig. 2
Stage at Diagnosis by Race/Ethnicity of Cancer Cohort Members. NH/PI: Native Hawaiian/Pacific Islander; AI/AN: American Indian/Alaska Native; Multi/Other: Multi-Racial/or other race/ethnicity
See this image and copyright information in PMC

References

    1. Bluethmann SM, Mariotto AB, Rowland JH. Anticipating the "silver tsunami": prevalence trajectories and comorbidity burden among older Cancer survivors in the United States. Cancer Epidemiol Biomark Prev. 2016;25(7):1029–1036. doi: 10.1158/1055-9965.EPI-16-0133. - DOI - PMC - PubMed
    1. de Moor JS, Mariotto AB, Parry C, et al. Cancer survivors in the United States: prevalence across the survivorship trajectory and implications for care. Cancer Epidemiol Biomark Prev. 2013;22(4):561–570. doi: 10.1158/1055-9965.EPI-12-1356. - DOI - PMC - PubMed
    1. Rowland JH, Yancik R. Cancer survivorship: the interface of aging, comorbidity, and quality care. J Natl Cancer Inst. 2006;98(8):504–505. doi: 10.1093/jnci/djj154. - DOI - PubMed
    1. Collins FS, Varmus H. A new initiative on precision medicine. N Engl J Med. 2015;372(9):793–795. doi: 10.1056/NEJMp1500523. - DOI - PMC - PubMed
    1. Jaffee EM, Dang CV, Agus DB, et al. Future cancer research priorities in the USA: a lancet oncology commission. Lancet Oncol. 2017;18(11):e653–e706. doi: 10.1016/S1470-2045(17)30698-8. - DOI - PMC - PubMed