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Data & Research

Research &
Data Requests

KCR provides researchers, epidemiologists, and public health agencies with access to de-identified cancer data for approved studies. All requests are reviewed for scientific merit and HIPAA compliance.

Request Process Overview
1

Submit Application

Complete and submit the data request form with project description

2

KCR Review

Staff reviews for feasibility, scope, and data availability

3

IRB & DUA

Provide institutional approval and execute data use agreement

4

Data Delivery

Receive de-identified data extract via secure transfer

Request Types

What kind of data do you need?

Most Common

Standard Data Extract

Pre-defined de-identified patient-level data fields for population-based epidemiological research. Includes demographics, diagnosis, stage, and treatment variables.

~6–8 wks IRB Required DUA Required
Aggregate Only

Public Health Tabulations

Aggregate counts and rates for public health surveillance, grant applications, and community needs assessments. No patient-level data; no IRB required for aggregate requests.

~2–4 wks No IRB Free
Custom

Special Study / Linkage

Complex requests involving record linkage, geocoded data, vital records matching, or special population analyses. Contact KCR staff before submitting.

8–16 wks IRB Required DUA Required
Ongoing Access

Rapid Response Registry

Annual data updates for ongoing longitudinal studies. Available to researchers with active data use agreements and approved research protocols.

Annual renewal Prior approval
Eligibility

Who may request data?

KCR data are available to qualified researchers and public health professionals whose projects meet scientific and ethical standards. Requests are evaluated on a case-by-case basis.

Eligible requestors

  • Academic researchers at accredited institutions
  • State and local public health agencies
  • Federal agencies (NIH, CDC, CMS)
  • Hospital quality improvement programs
  • Non-profit health organizations with IRB approval
  • Healthcare providers for patient follow-up

Not eligible

  • Commercial entities seeking data for marketing
  • Insurance companies for underwriting purposes
  • Employers seeking information about individuals
  • Legal proceedings without proper judicial order
  • Requests that could re-identify individuals
  • Projects without institutional affiliation
Application Process

Step-by-step guide

1

Review data availability & dictionary

Download and review the KCR data dictionary to confirm the variables you need are available. Note any special variables that may require additional review or restricted access.

Pre-application
2

Obtain IRB approval or exemption

Most patient-level data requests require IRB approval from your home institution. Aggregate-only requests may qualify for an IRB exemption. Include IRB documentation with your application.

Before submission
3

Submit the KCR data request application

Complete the online application form, including the project abstract, specific aims, variable list, requested years of data, and any additional methodological notes. Applications are reviewed monthly.

Submission
4

KCR staff feasibility review

KCR epidemiologists review your request for scientific merit, data feasibility, and completeness of documentation. You may be contacted for clarification or revisions.

2–3 weeks
5

Execute Data Use Agreement (DUA)

Upon approval, your institution's authorized signatory must execute the KCR Data Use Agreement. This legally binding agreement governs how data may be used, stored, and shared.

1–2 weeks
6

Pay applicable fees & receive data

Fees are invoiced upon DUA execution. Data are delivered via secure SFTP or encrypted media within the estimated timeframe. KCR staff are available to assist with interpretation.

1–4 weeks after DUA
Fee Schedule

Data request fees

Fees help support KCR's data extraction and quality assurance activities. Fees are waived for Kentucky state agencies. A 50% academic discount is available for non-commercial research at accredited institutions.

Request Type Base Fee Academic Rate Turnaround
Aggregate tabulation (public) Free Free 2–4 weeks
Standard extract (1 year) $500 $250 6–8 weeks
Standard extract (5+ years) $1,500 $750 8–10 weeks
Custom / special study Quote Quote 8–16 weeks
Rapid Response (annual update) $300/yr $150/yr Per cycle