What De-identified Tissue and Data Can be Requested Through the SEER-Linked VTR Program?

  • Archival, formalin-fixed, paraffin-embedded (FFPE) tissue, obtained through clinical diagnosis and care between 1 and 9 years ago
  • Demographic information and outcomes
  • Clinical data
    • Tumor diagnosis, stage at diagnosis, and/or selected biomarkers
    • Surgical and systemic treatments
    • Radiation therapy
  • Pathology report(s)
  • Digital whole slide images (WSIs)

Note 1: For a full list of data items collected by cancer registries, refer to the NAACCR Data DictionaryExternal Web Site Policy.

Note 2: Tumor and normal tissue may be requested. Normal tissue from the affected organ site or from another tissue site may be limited to what is available.

What Tissue Processing and Other Services do VTR Program Registries Provide?

  • Confirmation of case eligibility
  • Pathology report review and de-identification
  • Pathologist review of slides for tissue block selection
  • Hematoxylin and eosin (H&E)-stained slide generation
  • Unstained slide generation
  • Tissue processed as scrolls or ribbons
  • Digital whole slide scanning
  • SEER data extraction
  • Medical records request, review, and custom clinical annotation

Sampling, Timelines, and Expectations

Attrition and Sampling

  • The SEER-Linked VTR Pilot Genomics Studies determined that the attrition rate for obtaining clinically generated, FFPE tissue specimens through the SEER registries acting as honest brokers was approximately 35%.
  • Sources of attrition included tissue not being available, cancer case treated out of state, tissue archived for ten or more years having been destroyed, tissue being depleted, only biopsy tissue was available, and/or tumors that were too small for the amount of DNA and/or RNA required.
  • NCI recommends oversampling cases by 35% to 40% to reach target of cancer cases with tissue processed.

Restriction to Cases Diagnosed in the Last 9 Years

Because some clinical laboratories discard or destroy tissue blocks once the ten-year minimum requirement to retain tissue as set forth by the College of American Pathologists has been met, the VTR Program only accepts requests for tissue and data on cancer cases diagnosed between 1 and 9 years ago. Cases diagnosed in the past twelve months are excluded because tissue may still be actively needed for diagnosis and determining cancer treatment.

Realistic Timelines and Expectations

  • The SEER VTR Program registries must negotiate with each clinical lab that holds needed archival tissue to gain access to the tissue blocks, and this process can be both time consuming and labor intensive.
  • The process of confirming case eligibility, determining the laboratories with available tissue, submitting tissue requests to the laboratories, and processing of tissue can take several months for smaller studies.
  • For requests for tissue involving more than 250 cancer cases, investigators should plan for their requests to be processed over multiple years.