SEER Cancer Registry Biospecimen Research: Yesterday and Tomorrow

Abstract

The National Cancer Institute's (NCI) Surveillance, Epidemiology, and End Results (SEER) registries have been a source of biospecimens for cancer research for decades. Recently, registry-based biospecimen studies have become more practical, with the expansion of electronic networks for pathology and medical record reporting. Formalin-fixed paraffin-embedded specimens are now used for next-generation sequencing and other molecular techniques. These developments create new opportunities for SEER biospecimen research. We evaluated 31 research articles published during 2005–2013 based on author confirmation that these studies involved linkage of SEER data to biospecimens. Rather than providing an exhaustive review of all possible articles, our intent was to indicate the breadth of research made possible by such a resource. We also summarize responses to a 2012 questionnaire that was broadly distributed to the NCI intra- and extramural biospecimen research community. This included responses from 30 investigators who had used SEER biospecimens in their research. The survey was not intended to be a systematic sample, but instead to provide anecdotal insight on strengths, limitations, and the future of SEER biospecimen research. Identified strengths of this research resource include biospecimen availability, cost, and annotation of data, including demographic information, stage, and survival. Shortcomings include limited annotation of clinical attributes such as detailed chemotherapy history and recurrence, and timeliness of turnaround following biospecimen requests. A review of selected SEER biospecimen articles, investigator feedback, and technological advances reinforced our view that SEER biospecimen resources should be developed. This would advance cancer biology, etiology, and personalized therapy research.

Validation of clinical prognostic indices for diffuse large B-cell lymphoma in the National Cancer Data Base

“…Direct recording of serum LDH, some measure of performance status and involvement of the high-risk extranodal sites (which is already collected for solid tumors) might align the clinical content of the NCDB with the new NCCN-IPI clinical standard. Enhancements of the national registry programs with molecular prognostic markers have been advocated as necessary for robust research on comparative effectiveness of treatments or quality of health care and recently have been successfully piloted for breast cancer, colorectal cancer, and chronic myeloid leukemia [37][38][39]. The newly developed Hematopoietic and Lymphoid Database is an excellent platform to improve the usability of cancer registry data as a valuable research resource for studying hematologic malignancies if it can be augmented by validated biomarkers [40].…”

The Surveillance, Epidemiology, and End Results (SEER) Program and Pathology

“…The RTR and the newly proposed VTR are recent pilot programs designed to scale up the “bio-banking” of pathology material from various cancer cases and to link (annotate) the tissues to the full SEER dataset 9 . The RTR maintains tissue from 3 cancer registries (Iowa, Hawaii and Los Angeles) and is comprised of formalin fixed paraffin embedded tissue blocks on all site specific cancers.…”

“…SEER in turn provides information and data which pathologists could use to further advance their roles as medical experts, scholars and managers. Further, through the Residual Tissue Repository (RTR) and the proposed Virtual Tissue Repository (VTR), SEER is working to set up bio-specimen banking which will be available as a research resource 9 . The goal of this article is to provide an overview of SEER for the pathology community, highlight aspects relevant to diagnostic pathology, present select examples for illustration, and stimulate interest amongst pathologists in working with registries such as SEER to enhance research and monitor practice.…”

Age-Specific Changes in Intrinsic Breast Cancer Subtypes: A Focus on Older Women

“…The incidence of breast cancer increases dramatically with age, and the majority of women who die of breast cancer are older than 65 years [1]. Although older patients are more likely to present with tumors that are hormone receptor (HR)-positive and HER2-negative when compared with younger patients, many older patients present with more aggressive triplenegative and HER2-positive phenotypes [2,3].…”