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Greater Plains Collaborative CDRN Collaboration

Collaboration is critical to address many research questions in clinical and translational sciences. There has been extensive interest from CDRNs, PPRNs, community partners, academia in general, and private industry to collaborate with the Greater Plains Collaborative CDRN.

Collaboration Overview

Collaboration Activities include, but are not limited to, the following:

  • Development and validation of computable phenotypes (algorithms to identify patients)
  • Prep to Research activities such as obtaining counts for feasibility or sample size estimates
  • Research on de-identified and limited electronic health record data
  • Identification of patients across the Greater Plains Collaborative CDRN
  • Contact of potential study subjects through phone, email, and other modalities
  • Survey Research
  • Observational research
  • Pragmatic clinical research
  • Hypothesis Generation
  • Stakeholder Engagement (Patients/Families, Clinicians, Clinics, etc)
  • Health Information Technology support for patient-facing studies
    • Electronic survey
    • Electronic payment
    • Electronic decision support for trial delivery

Collaboration as a Researcher

Please reference the GPC Resource Guide for Investigators

Greater Plains Collaborative Data and Informatics Environments - Overview and Costs

Below is a listing of the various data and informatics environments offered by the Greater Plains Collaborative CDRN and their associated estimated costs.

  • Babel
    • What: Ontologies across multiple i2b2 instances with counts of the number of patients or patients/facts recorded at each node stored in an i2b2 instance.
    • Access: Either an account on GPC babel.gpcnetwork.org i2b2 for browsing, building and sharing computable phenotypes/queries, or JDBC access to the back end Oracle database for running queries and pulling down the data/ontologies.
    • Cost: Free, but please acknowledge PCORnet and CTSA funding when seeking collaborators and attribute on academic products and initiatives. 
    • Governance: Do not redistrubute data without permission.
  • SNOW/SHRINE
    • What: Network with key distinction of incorporating tumor registry data with EHR/Billing data. 
    • Access: For counting, must have an account at a GPC site who will in turn let you query the other GPC sites.
    • Cost: Free for adjunct faculty at GPC institutions. A cost structure can be worked out for others upon request that will range from ~$1,000 - $5,000. 
    • Governance: Must sign our External Institutional Collaborator Agreement (EICA) or be adjunct with a GPC school and working through them. Once the EICA is signed it can be used for all subsequent requests for data use and feasibility activities. 
  • Distributed SAS Queries Against the PCORnet CDM at Sites
    • What: Running queries and deeper distributed analysis using SAS against each GPC site's CDM tables.
    • Access: Once the query is written, submit to PCORI Front Door or the GPC Data Use Process.
    • Cost: For code pulling back aggregate results/plots, ~$1,000 process management fee and ~$150 - $300 per site to run the query and sent results back. 
    • Governance: Must sign our External Institutional Collaborator Agreement (EICA).
  • De-identified Data Use
    • What: Receiving de-identified data in CSV files from REDCap projects for your i2b2 query or SAS CDM query.
    • Access: Develop i2b2 or SAS code at a site, and then submit a data request.
    • Cost: $2,000 central coordination fee, and $500 fee per site. 
    • Governance: Must sign our External Institutional Collaborator Agreement (EICA). No IRB is required.
  • Limited Data Sets Data Use
    • What: Limited data sets including dates and zipcodes. 
    • Access: Develop i2b2 or SAS code at a site, and then submit a data request. Must coordinate IRB reliance using SmartIRB.
    • Cost: $4,000 central coordination fee plus IRB costs under SmartIRB, and $500 fee per site. 
    • Governance: Must sign our External Institutional Collaborator Agreement (EICA) and have an approved IRB using SmartIRB.
  • GROUSE
    • What: A unique, centralized, integrated, de-identified repository containing CMS data linked to i2b2 and CDM data repositories for GPC states, EHR, claims, and tumor registries, over 20 million beneficiaries, and over 10 million GPC patients. The environment holds zipcodes to American community survey linkages for sociodemographics, as well as the Social Security Death Index. Can look at BMI and cost, cancer stage/grade, and Part D drug benefits and chemo infusions. 
    • Access: VPN in to KUMC servers and run R, SAS or SQL on our servers. 
    • Cost: CMS reuse fees (~$5,000), $10,000 IRB and GPC coordination fee, and $2,000 fee per user for onboarding and support. 
    • Governance: Must sign our External Institutional Collaborator Agreement (EICA), have an approved IRB, and file a reuse agreement with CMS.

Submitting Grants Leveraging the Greater Plains Collaborative CDRN

Please feel free to use the following templates for Letters of Support, Grant Submissions leveraging the GPC, and Budget Justifications for developing your GPC CDRN project proposal budget. 

Data Request Information

Site Level Data Characterization

  • All GPC sites participate in the PCORnet Common Data Model (CDM). Portions of each sites data characterization report have been uploaded on our site level data characterization page. This will give researchers an overview of the data at each site. 

SHRINE Information

  • To search for feasibility counts across the Greater Plains Collaborative, please visit our SNOW SHRINE page. 

GROUSE Information

  • GROUSE (Greater Plains Collaborative Reusable Observable Unified Study Environment) is a GPC project to obtain health insurance claims, please visit our GROUSE page to learn more about this rich data. 

I2B2 Information

  • All sites in the Greater Plains Collaborative have an i2b2 based repository. The University of Kansas Medical Center has numerous trainings. Please see our Guide to using HERON.

IRB Information 

All of our GPC institutions have signed on to SMART IRB.

SMART IRB Participating Institution

 

 

Collaboration as a Patient

The Greater Plains Collaborative is funded by the Patient-Centered Outcomes Research Institute, and as such we are always trying to involve patients in our activities as much as possible. We need patient collaborators to attend our events, help plan our studies, and to guide the direction we take as a network. If you are a patient who wishes to collaborate with the GPC as a Patient Advisor, please visit our Patient Resources page to see ways you can get involved.

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