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Resources & Tools

Our office supports the following resources and tools.

The Healthcare Enterprise Repository for Ontological Narration (HERON) is an integrated clinical data repository with more than 2 million patient electronic medical records (EMR) as well as research participant registry, socioeconomic data, death data, and clinical notes, which is a valuable resource for clinical and translational research. KU Medical Center researchers can build study cohort with HERON using the i2b2 (Informatics for Integrating Biology and the Bedside) software and request de-identified and identified data. 

HERON

Green HERON is a highly protected health data analytic space where approved users can work with de-identified health information. Green HERON simplifies the effort of obtaining EMR data from HERON, while supporting external researchers with approved NetIDs. The analytics space offers a rich set of tools, services, and resources required by research. Within the protected environment, Green HERON users are provided the ability to select analytic tools such as R, SAS, and Python. 

Green HERON

REDCap is used by more than 700 institutions in over 60 countries and has become a dominant tool for electronic data capture for research studies at most academic medical centers in the United States. REDCap is now connected to the KU Medical Center CAS System (Central Authentication System) to allow users to bypass multiple logins. Research Informatics provides consultation and build services within the Epic O2 electronic health record (EHR) to support research study administration, research data capture, and recruitment via real-time reports using Reporting Workbench or point-of-care alerts.

REDCap

PCORnet-The Patient-Centered Outcomes Research Institute (PCORI), an independent nonprofit, nongovernmental organization in Washington, DC, was authorized by Congress in 2010. Our mandate is to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make better-informed health decisions. To do this, we work with those health care stakeholders to identify critical research questions and answer them through comparative clinical effectiveness research, or CER, focusing on outcomes important to patients. We also disseminate the results in ways that members of the healthcare community will find useful. 

PCORnet

Greater Plains Collaborative (GPC) is a network of 12 leading medical centers in nine states committed to a shared vision of improving health care delivery through ongoing learning, adoption of evidence-based practices, and active research dissemination. The GPC builds on strong research programs at our sites, existing community engagement and informatics infrastructures and data warehouses developed through the NIH Clinical and Translational Science Award (CTSA) initiative at most of our sites, extensive expertise with commercial EHR systems and terminology standardization, and strong working relationships between investigators and healthcare system information technology departments. Our network brings together a diverse population of over 21 million patients across 1,550 miles covering nine states with a combined area of 758,325 square miles.

Greater Plain Collaborative (GPC)

The most versatile of Epic's decision support tools, BestPractice Advisories (BPAs) provide targeted, patient-specific clinical guidance to your users on a wide variety of topics and from many workflows in Hyperspace. BestPractice Advisories scan the entire patient record and can display notifications based on many key pieces of clinical data, such as lab results, assessment data, current medications, diagnoses, and histories. Advisories can include links to relevant actions, such as placing additional orders, initiating a care plan, or sending an In Basket message.

For more information on this resource please contact our dataconcierge@kumc.edu.

Automated cohort discovery/prescreening through Reporting workbench is built directly in EPIC/O2. The report identifies patients who meet inclusion/exclusion criteria and can be refreshed by the study coordinator. This is not clinician-facing. However, this must be limited to patients within the researcher’s department or obtain approval from other departments.

For more information on this resource please contact our dataconcierge@kumc.edu.

The N3C is a partnership among the NCATS-supported Clinical Translational Science Awards (CTSA) Program hubs, the National Center for Data to Health (CD2H), and NIGMS-supported Institutional Development Award Networks for Clinical and Translational Research (IDeA-CTR), with overall stewardship by NCATS. As a partner, KU Medical Center is contributing COVID-19 clinical data to the N3C data enclave. KU Medical Center researchers can request access to the N3C data enclave to conduct studies for answering critical COVID-19 related research questions.

National COVID Cohort Collaborative (N3C) | National Center for Advancing Translational Sciences (nih.gov)

The 4CE is an international consortium for EHR data-driven studies of the COVID-19 pandemic. The goal of this effort is to inform doctors, epidemiologists, and the public about COVID-19 patients with data acquired through the health care process. 4CE is using a distributing learning framework where researchers post their queries through the coordinating center for participating sites to run the queries locally without raw EHR data leaving their institutions.

 4CE (covidclinical.net)

Access a network of sites, de-identified data and research resources. Conduct high-volume, efficient trial and outcomes research. Receive the opportunity to generate revenue through funded research studies. For more information, please visit Cerner LHN. To get access to the CLH please fill out this request form Cerner LHN Data Access Proposal.

Cerner Learning Health Network

Access a network of sites, de-identified data and research resources. Conduct high-volume, efficient trial and outcomes research. Receive the opportunity to generate revenue through funded research studies.

Cosmos combines billions of clinical data points in a way that forms a high quality, representative, and integrated data set that can be used to change the health and lives of people everywhere.

  • Access a network of sites, de-identified data, and research resources
  • Conduct high-volume, efficient trial and outcomes research
  • Receive the opportunity to generate revenue through funded research studies

Cosmos-Epic

For more information on this resource please contact our dataconcierge@kumc.edu.

A data management plan asks the researcher to consider how data and associated products of research (such as code or other files) will be handled across the life span of a project and beyond. This includes how the data will be stored, secured, accessed, documented, formatted and versioned. The plan should also include where and when data will be shared, if it will be made publicly available, how it will be licensed for reuse and how and for how long data will be archived. Both general best practices for data management and archiving should be considered as well as any discipline-specific practices for file formats, metadata and documentation that would support the discovery and reuse of the data. If your research involves human subjects or other sensitive information, ethics, consent, and de-identification of data should also be addressed.

Data Management Plan (Word)

Create Data Management Plans that meet requirements and promote your research. 

To build your Data Management Plan visit this link DMPTool  

  1. Sign in/Sign up
  2. Create a plan
  3. Enter what research project you are planning
  4. Select the primary research organization (e.g., University of Kansas Medical Center)
  5. Select the primary funding organization, under funder select “National Institutes of Health (nih.gov)”
  6. Which DMP template would you like to use? Select “NIH Gen DMSP (Forthcoming 2023)”
  7. Enter your Project Details, Collaborators, Write Plan, then you can download the plan in a word document (docx) and Finalize and Publish (to control who gets to see the plan).

 For more information about the DMSP, please contact our dataconcierge@kumc.edu.

  • SlicerDicer is a self-service reporting tool that clinicians, managers, and other roles can use to explore the data in Caboodle, Epic’s enterprise data warehouse. Out of the box, users can explore data in Epic-released data models. You can control which data models users can access and whether they can see line-level details or only summarized counts, SlicerDicer includes powerful data exploration abilities for clinical, access, and revenue subject areas. In SlicerDicer, users can investigate a hunch and then refine their searches on the fly.
  • [Note: EPIC O2 Access is required]

    For more information on this resource please contact our dataconcierge@kumc.edu.

Research Match is a nonprofit program funded by the National Institutes of Health (NIH). It helps to connect people interested in research studies with researchers from top medical centers across the U.S.

ResearchMatch

For more information on this resource please contact our dataconcierge@kumc.edu.

The All of Us Research Program is inviting one million people across the U.S. to help build one of the most diverse health databases in history. We welcome participants from all backgrounds. Researchers will use the data to learn how our biology, lifestyle, and environment affect health. This may one day help them find ways to treat and prevent disease.

All of Us Research Program | National Institutes of Health (NIH)

Other Informatics Tools at KUMC

Data used to determine patient eligibility for cancer clinical trials often come from disparate sources that are typically maintained by different groups within an institution, use differing technologies and are stored in different formats. Collecting data and resolving inconsistencies across sources increase the time it takes to screen eligible patients, potentially delaying study completion. To address these challenges, the Biostatistics and Informatics Shared Resource at The University of Kansas Cancer Center developed the Curated Cancer Clinical Outcomes Database (C3OD). C3OD merges data from the electronic medical record, tumor registry, bio-specimen and data registry, and allows querying through a single unified platform. By centralizing access and maintaining appropriate controls, C3OD allows researchers to more rapidly obtain detailed information about each patient in order to accelerate eligibility screening. This case report describes the design of this informatics platform as well as initial assessments of its reliability and usability.

Cancer Curated Clinical Outcomes Database (C3OD)

C3OD User Manual

CRIS, also known as Velos, is a single, secure system for storage and tracking of subject enrollment data, regulatory information, study-related documents, study calendars and study budget information for past and current research. CRIS is also used in billing compliance activities. 

Training Request Form

This service is handled in collaboration with The University of Kansas Health System Research Informatics. They set up reporting workbench reports to automatically identify patients who match a defined set of inclusion/exclusion criteria.

For more information on this resource please contact our dataconcierge@kumc.edu.

Investigational Drug Service (IDS), supported by the Center for Clinical and Translational Research, is a licensed pharmacy that provides support and guidance for the safe and efficient conduct of clinical drug trials.

For more information on this resource please contact our dataconcierge@kumc.edu.

The Accrual Prediction Program provides accrual information, including the predicted completion date, predicted number of accrued subjects during the pre-specified accrual period and the probability of achieving accrual targets for all KU Cancer Center clinical trials.

Accrual App. (kumc.edu)

KU Cancer Center Clinical Trials Finder helps navigate current active clinical trials and helps physicians/clinicians refer patients to an ongoing trial that might help with their treatment.

Android: KUCC Clinical Trial Finder - Apps on Google Play

iOS: KUCC Clinical Trial Finder on the App Store

Volunteers is a database tool to facilitate recruitment and track information, hosted by the Department of Biostatistics and Data Science.

For more information on this resource please contact our dataconcierge@kumc.edu.

OPTIK helps streamline the process of synthesizing data regarding Kansas and Missouri demographics, cancer risk factors, and incidence and mortality rates. OPTIK standardizes these diverse data sources to analyze the cancer burden at local, regional, and national levels while upholding a strict standard of patient privacy.

Biostatistics and Informatics Shared Resource (BISR)

IPA-Ingenuity Pathways Analysis enables scientists (e.g., biologists, geneticists, bioinformaticians) to identify the most relevant biological mechanisms, pathways and functions to their experimental datasets or genes of interest.

IPA, Software, Department of Biostatistics & Data Science

Offered through the Department of Biostatistics & Data Science, the clinical trial sample size tool helps predict the time it will take to reach your study’s desired sample size.

Analysis tools for clinical trials

Track Complete Lifecycle of your Biospecimen Inventory from Collection to Utilization. Collect high-quality data based on your research needs (like smoking history, breast pathology annotations, genetics, lab tests, etc.) and use our powerful reporting module to get data out. Easily integrate with other databases or instruments like REDCap, Epic, Oncore, Hamilton BiOS, etc. 

For more information about open specimen please visit Open Specimen.

Research Informatics

University of Kansas Medical Center
Research Informatics
Student Center, 3001C 
3901 Rainbow Boulevard
Kansas City KS 66160 
913-588-7251 

Research and Project Requests: dataconcierge@kumc.edu 
HERON and REDCap support: ocriosupport@kumc.edu