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SEER-LINKED VIRTUAL
TISSUE REPOSITORY
Rosemary D. Cress, DrPH
December 7, 2015
Biospecimens and cancer research

It is becoming increasingly obvious that categorizing
cancers merely by anatomic site is inadequate to
understanding the heterogeneity of risk factors,
response to treatment and prognosis.
 For
example, subtypes of breast cancer based on
hormone receptor status have been shown to vary in
prognosis and require different target treatments.
 Gene expression profiling has been shown to identify
breast cancer patients at higher risk of recurrence,
sparing low risk women the morbidity of chemotherapy.
Biospecimens and cancer research (2)
This increases the importance of including
biospecimens in cancer research.
 However, collecting biospecimens is expensive
and can only be done on a small number of
research subjects.
 Institutional biorepositories are valuable
resources but have limitations for population
based research.

The SEER program


The Surveillance, Epidemiology and End Results
(SEER) program of the National Cancer Institute has
collected population based data on cancer from
across the US since 1972.
Data collected include demographics (age, race),
tumor information (site, histology), stage at
diagnosis, first course of treatment, and vital status,
which is updated annually.
SEER Cancer Registry Regions
-Initiated in 1973
-In 2001: all of CA
was included in
expansion
-SEER represents
28% of US
population
http://www.seer.cancer.gov/
-California makes
up 47% of the
SEER population
SEER and biospecimens
SEER has had a long interest in enhancing their
data with biospecimens, and making
biospecimens annotated with registry data
available to cancer researchers.
 In 2001, SEER funded three Residual Tissue
Repositories (RTRs) in Iowa, Hawaii and Los
Angeles.

SEER and biospecimens (2)
These registries collected formalin-fixed
paraffin-embedded (FFPE) tissues from hospital
laboratories as they were discarded, and
linked them to SEER registry data in those
areas.
 The RTRs supported an enormous amount of
research but proved very expensive to
maintain.

SEER Virtual Tissue Repository (VTR)
Experience and best practices indicate that the
NCI SEER program can support cancer
research by creating a SEER-linked Virtual
Tissue Repository (VTR).
 In this model, SEER registries would serve as an
“honest broker”, requesting biospecimens from
reporting hospitals, annotating them with
patient and tumor data, and providing deidentified specimens to researchers.

SEER VTR
A SEER VTR, with its population
representativeness and large sampling frame,
would be a unique resource for assembling
robust collections of annotated biospecimens,
even for rare tumors and outcomes.
 In 2015, SEER issued a request for proposals to
participate in a VTR pilot study

SEER VTR (2)

SEER registries selected to participate include
Hawaii, Iowa, Connecticut, Louisiana, Kentucky,
Utah, and Greater California (the registry that
covers all of California except Los Angeles and
the Greater SF Bay Area).
SEER VTR (3)

The objectives of this study are:
 To
assess the ability of SEER Contractor Registries to
serve as a resource for biospecimen research.
 To locate patients with biospecimens in pathology
laboratories and determine the requirements to retrieve
those biospecimens.
 To provide custom annotation of specified data items.
 To capture costs for identifying each available
biospecimen and performing custom annotation of each
biospecimen.
SEER VTR (4)
SEER annotation includes information routinely
collected by SEER registries including
demographic and clinical characteristics such
as tumor histology, treatment, and outcomes.
 Annotation can also include custom data,
abstracted from medical records, such as
detailed chemotherapy, time to recurrence, and
body mass index.

Cancer Registry of Greater California





The Cancer Registry of Greater California (CRGC)
became part of the SEER program in 2001
CRGC collects information from a broad geographic
area with a population of nearly 20 million people
residing in 48 of the 58 counties of California.
The CRGC population is very diverse by race/ethnicity,
urban/rural residence, and socioeconomic status.
Over 80,000 new invasive cancer cases are diagnosed
and processed by CRGC staff each year.
CRGC is the largest SEER registry participating in VTR.
SEER VTR (5)

The study will focus on the feasibility of collecting
specimens from selected breast and pancreas cancer
patients.
 Breast “cases”: those that survived less than 2
years
 Breast “controls”: survived at least 5 years
 Pancreas “cases”: those that survived at least 5
years
 Pancreas “controls”: survived less than 2 years
SEER VTR methods



Study staff are in the process of identifying 200
eligible patients from the CRGC database
Staff are querying our registry data management
system to identify hospitals where sampled patients
received definitive surgery, as well as pathology
text information, pathology report number, and/or
medical record number.
Electronic and paper pathology reports will be
collected
SEER VTR methods (2)
CRGC staff will contact hospital and free
standing pathology laboratories that according
to our records have relevant specimens
 They will conduct a survey to assess the
laboratory’s willingness to provide an H&E
slide along with 10 unstained sections for
analysis, or a tumor block to be processed by
a pathology laboratory in our area.

SEER VTR methods (3)

For hospitals willing to provide specimens, staff
will collect information on requirements and
costs. A standardized survey to collect
information about the laboratory’s willingness
to share tissues, ethical and privacy
requirements to share de-identified and barcoded specimens, and terms under which
materials are available is currently being
finalized in conjunction with SEER and other PIs.
SEER VTR methods (3)
We will request a pathology review in
pathology laboratories willing to share tissues
of up to 10 randomly selected pancreatic or
breast cancer control subjects to assess
specimen quality.
 For hospitals unwilling or unable to provide
specimens, reasons for this also will be
collected.

SEER VTR methods (4)

In addition to routine registry information, SEER
has requested that registries collect additional
information from medical records, including
detailed information about treatment and
cancer recurrence.
SEER VTR – current status
This study is still in its initial stages
 SEER has provided lists of “cases” but is still
developing lists of “control” subjects
 We have applied for institutional (Public Health
Institute) IRB approval for the study.
 Dr. Regina Gandour-Edwards, director of the
UCD Cancer Center Biorepository, is serving as
a consultant to the CRGC.

Conclusions
Although there are major challenges to
overcome, this study promises to greatly
advance research requiring population based
biospecimens.
 If successful, the CRGC hopes to develop the
infrastructure to conduct much more of this type
of research in the future.

Questions?