Virtual Tissue Repository
The Kentucky Cancer Registry’s (KCR) Virtual Tissue Repository (VTR) Program provides external academic and industry researchers with access to population-based, formalin-fixed, paraffin-embedded (FFPE) tissue collected during cancer diagnosis and care, along with linked, de-identified registry data. This infrastructure supports secondary use of biospecimens and data for cancer research, including studies of communities with limited access, rare cancers, rare outcomes, and multiple primary diagnoses. Access is available to external investigators and industry partners collaborating with University of Kentucky researchers.
AVAILABLE
DATA &
BIOSPECIMENS
KCR VTR offers the following de-identified data and biospecimens.
Archival FFPE Tissue
Obtained through clinical diagnosis for research in the following formats:
- Hematoxylin and eosin-stained (H&E) tissue slides
- Unstained tissue slides
- Scrolls
- Ribbons
Cancer Data
Obtain the following de-identified cancer data:
- Demographics & outcomes
- Clinical treatment information
- Tumor characteristics (i.e. primary site, histology, stage at diagnosis, grade, various biomarkers)
- Surgical and systemic treatment
- Radiation therapy
Additional Materials
VTR also offers the following materials:
- De-identified pathology reports
- De-identified digital whole slide images (WSIs)
- Custom Clinical Annotation
Pathology services are provided by the University of Kentucky’s Biospecimen Procurement and Translational Pathology Shared Resource Facility (BPTP) and affiliated clinical pathology laboratories within the KCR service region that house tissue specimens. KCR VTR staff serve as an honest broker, coordinating with these laboratories to obtain requested samples for academic and industry collaborators. When required, material transfer agreements (MTAs), data use agreements (DUAs), and nondisclosure agreements (NDAs) are executed between laboratories, VTR, and external partners. VTR staff manage specimen receipt, de-identification, and secure transfer of materials and associated clinical data. Pathology service fees are billed directly to customers by the respective laboratories at established rates; VTR service fees are listed under the Costs & Fees section.
DATA
- KCR VTR offers a standard variable dataset, including demographics, case information, and follow-up information.
- Custom clinical annotation is available upon request. KCR collects many data variables, and additional variables may be requested. Certain variables may require electronic medical record abstraction.
KCR VTR REQUEST PROCESS
Researcher/Industry Partner
KCR VTR
Researcher/Industry Partner
KCR VTR
KCR VTR
KCR VTR
Researcher/Industry Partner
Researcher/Industry Partner
KCR VTR
REQUEST
SERVICES
Request for Services Submission
To request VTR Services, please fill out the following REDCap request form. KCR VTR staff will contact you for next steps within 3-5 days after the submission is received.
How many biospecimens can I request?
KCR VTR offers data and biospecimens for up to 200 cancer cases per calendar year. If a study requires more than 200 cases, KCR VTR can provide data and biospecimens over multiple years.
What is the timeline for receiving data and biospecimens?
The timeline will vary depending on the type of tissue and data requested. Samples that consist of population-based tissue, rare cancers, or cancers in underrepresented populations may take more time to acquire. Typically, KCR VTR can acquire samples on up to 200 cases per calendar year, though this is variable.
What documentation do I need for final submission?
Once you have submitted both REDCap study information forms, met with KCR VTR staff, and the study has been approved, KCR VTR requires the following documentation before proceeding with the biospecimen/data request:
- Institutional IRB protocol: a copy of the study IRB approval letter from your institution
- Institutional IRB approval letter: a copy of the study IRB approval letter from your institution
- Material transfer agreement: This will be sent from KCR VTR to you for biospecimen transfer
- Data use agreement: You will have to sign a data use agreement to receive data from KCR
- Funding documentation: If funding has been awarded, KCR VTR requires documentation with the funding that was awarded, start and end dates for awarded funding, and identification of the funding source.
- Updated contact information for the primary and secondary contacts for the study
- CVs for the PI and co-investigators
What if I do not yet have funding?
KCR VTR prioritizes requests in the order that they were received, regardless of funding status. KCR VTR allows a 12-month grace period for funding to be awarded. Other studies requiring the same biospecimens will not be supported during this period to avoid competition over specimen acquisition.
How will the data and biospecimens be de-identified?
KCR VTR acts as the honest broker for data and biospecimens. KCR VTR staff will ensure that all data and biospecimens are completely de-identified and assigned a unique study ID before transferring to the researcher. This allows for the biospecimens to be linked to case data, pathology reports, etc. KCR VTR does not offer identifying case information.
What if another investigator is interested in the same tissue type?
Multiple studies on the same cancer site/type will not be supported simultaneously. Studies are prioritized by date of service request submission.
What types of data can I request?
- KCR VTR offers a dataset of standard variables
- Demographics
- Sex; Race; Ethnicity; Age at diagnosis; Tobacco Use; Cigarette Pack Years; Marital Status at diagnosis; Rural/Urban Continuum Code (2003); Rural/Urban Continuum Code (2013); Appalachian residence; Primary Payor
- Case Information
- Diagnosis Date (month/year ONLY); SEER Site; Topography; Histology; Behavior Code; Case Sequence Number; Diagnostic Confirmation Code; Class of case; SEER Summary Stage 2000; Best Stage; Tumor Grade; Regional Nodes Positive; Regional Nodes Examined; Tumor Size; Tumor Extension; Treatment Composite (First); Treatment Composite (All)
- Follow-up Information
- Vital Status; Date of Last Contact/Death (month/year ONLY); Survival Interval
- Demographics
- KCR VTR also offers custom clinical annotations for variables not included in the standard dataset at an additional charge.
KCR VTR Rates for Service
KCR VTR has an established cost structure for services. Pathology services will be charged to the customer separately by the pathology laboratory completing processing. If customers elect to use the University of Kentucky’s Biospecimen Procurement and Translational Pathology (BPTP) lab for processing, KCR VTR staff will facilitate lab orders and specimen transfer, and BPTP will directly invoice for pathology services. BPTP information can be found at: Biospecimen Procurement and Translational Pathology Shared Resource (BPTP SR).
Additionally, laboratories that VTR requests tissue from may choose to do their own specimen processing at their own facility at their own rates and will invoice directly. KCR VTR supply costs will be charged at the approved vendor rate based on actual usage per study. Financial agreements and material transfer agreements will be established between the VTR and the researcher or industry partner to ensure payment and specimen transfer.
| Service | Academic Investigator Cost | Industry Partner Cost |
|---|---|---|
| Follow-up meeting and case review. (Includes determination of case eligibility criteria.) | $530/study | $1,324/study |
| Pathology reports request (if not in the database) | $10/case | $24/case |
| Pathology reports de-identification and quality control | $12/case | $31/case |
| Data: confirmation of de-identification and quality control | $8/case | $19/case |
| Selection of cases meeting eligibility criteria | $12/case | $31/case |
| Tissue requests from >2 laboratories | $80/each additional lab | $201/each additional lab |
| KCR Standard Clinical Dataset (de-identified) (200 cases per dataset) | $147/dataset | $369/dataset |
| Special data coding for custom clinical variables not included in the standard dataset (request up to 6 maximum additional fields) | $63/hour | $158/hour |
| Project-specific travel for custom clinical annotation requiring EMR abstraction | Federal standard rate/mile | Federal standard rate/mile |
| Project-specific lodging fees for custom clinical annotation requiring EMR abstraction (for projects that require multiple days of abstraction or at locations a significant distance from VTR office) | Standard per diem rate and estimated lodging costs | Standard per diem rate and estimated lodging costs |
| Honest Brokerage for studies with pathology services provided by BPTP | $72/batch | $179/batch |
| Honest Brokerage for studies with WSI performed at UK using Aperio service | $72/batch | $179/batch |
| Honest Brokerage for studies with tissue processing performed at external labs | $72/batch | $179/batch |
| Administrative Fees | $400/month | $1,001/month |
| Shipping and supplies | At cost/shipment | At cost/shipment |
| VTR Supplies (i.e. lab tape, paper, other supplies used for de-identification and honest brokerage) | At cost/study | At cost/study |
Inquiry and Submission
If you are interested in KCR VTR services and would like more information about the program and process before submission or have additional questions, contact:
Lexee Long
KCR VTR Director
Email: Lexee.Long@uky.edu
Phone: 859-218-2113
About Kentucky Cancer Registry
In 1990, the State General Assembly passed legislation that formally established The Kentucky Cancer Registry (KCR) as the official population-based central cancer registry for the Commonwealth of Kentucky. KCR is currently a part of both the National Cancer Institute's Surveillance Epidemiology and End Results (SEER) program and the Centers for Disease Control and Prevention's National Program of Cancer Registries (NPCR). KCR is an active participant in the North American Association of Central Cancer Registries (NAACCR)
