Why is a population-based biorepository so critical?

  • Currently, most tissue-based research is conducted using specimens from people enrolled in clinical trials or investigator-initiated studies conducted at a small number of institutions.
  • The participants in these studies are not necessarily representative of the United States population.

About the SEER-Linked Virtual Tissue Repository (VTR) Program

The Surveillance Research Program (SRP) is addressing this lack of specimens for population-based cancer research by establishing an infrastructure for researchers and other investigators to obtain de-identified, but linked, tissue and data on cancer cases ascertained by the SEER Program cancer registries. In addition to exploring other cancer research questions, investigators can study the following types of cancer cases through the SEER-Linked VTR Program.

  • Cancers among underrepresented population subgroups
  • Rare cancers
  • Cancer cases with unusual cancer outcomes
  • Early onset cancers
  • Cases with multiple diagnoses of a primary cancer

Participating SEER Program registries function as

honest brokers
What is an Honest broker?

A neutral intermediary (person or system) between the researcher and the individual whose tissue and data are being studied.

For more information visit the HHS website.

for providing researchers with de-identified, but linked, archival, formalin-fixed, paraffin-embedded (FFPE) tissue from clinical care and/or clinical data obtained from medical record abstraction for secondary use in cancer research (Figure 1). Researchers may also request de-identified demographic information, outcomes, pathology reports, custom clinical data collection, and/or digital whole slide images (WSIs).

Current VTR Program Registries have received approval of their local Institutional Review Board (IRB) and include:

The SEER-Linked VTR Program will prioritize academic projects.

Figure 1: How does the SEER-Linked VTR Program work?
request process

View larger image
Figure 1: How does the SEER-Linked VTR Program work?
request process

Following are the general steps in the SEER-Linked VTR Program operations. For details about request submission visit VTR Request Inquiry & Submissions.

  1. Investigator submits request to SEER-Linked VTR Program.
  2. Study is reviewed by NCI and SEER VTR Registries.
  3. SEER VTR Registry meets with investigator about study design, and investigator submits the final request.
  4. SEER VTR Registries act as honest brokers to request (a) clinical records and/or (b) FFPE tissue.
  5. Treating facilities and pathology laboratories send (a) clinical records and/or (b) FFPE tissue to the SEER VTR Registry for processing and de-identification.
  6. SEER VTR Registry sends de-identified, linked data and/or tissue the investigator.

Rationale for SEER Registries as Honest Brokers

The SEER cancer registry system serves as an ideal infrastructure for the development of a VTR for the following reasons. These population-based registries

  • serve as a renewable resource with approximately 994,000 cancer cases ascertained per year
  • conduct active longitudinal follow-up
  • maintain established relationships with hospitals and pathology laboratories
  • have extensive experience in data collection
  • maintain clinical annotation