Research Data Resources

Owned by Amaka Ohiku (Unlicensed)
Last updated: Oct 19, 2022 by Alyssa Hill
4 min read

TriNetX

What is TriNetX?

TriNetX is the global health research network that enables research discoveries through the generation of real-world evidence.

Where does the data come from?

  • EMR systems:

  • Structured

  • Unstructured processed by Natural Language Processing

  • Cancer registery

  • Molecular genomics

What kind of data is in TriNetX?

  • Demographics

  • Diagnosis

  • Procedures

  • Medication

  • Lab results

  • Vital signs

  • Tumor site, histology/behavior, stage

  • Cancer specific Factors

  • Genes and individual variants

  • Data enriched by TriNetX(e.g., Calculated eGFR)

  • Complex Definitions (e.g., Chemo treatment)

  • Algorithmic (e.g., Chemo lines of therapy)

 

What data is not in TriNetX?

  • Claims data

  • Data collected for solely for Clinical trials

What can you use it for?

  • Access UofU data

  • Access to a broader network (“TriNetX Research”)

  • Opportunity to participate in Industry sponsored Clinical trials

  • Collaborate with peer institutions on multi-site research

  • Trial design and Feasibility

  • Site selection

  • Patient recruitment

Can you download a dataset?

Yes, de-indentified data can downloaded from the TriNetX Platform.

What you get identified data?

Yes, with IRB approval

Why TriNetX?

  • Fresh, up-to-data data

  • make data and analytics significantly easier for researchers to access

  • An intuitive analytics platform

  • Ability to download data sets

 

 

 

PCORnet

What is PCORnet?

PCORnet®, the National Patient-Centered Clinical Research Network comprises a community of patients and their families, researchers, scientists, clinicians, health systems, and other committed individuals and organizations. Through this partnership, and within an environment of mutual trust and shared responsibility, PCORnet is transforming the culture of clinical research from one directed by researchers to one driven by the needs of patients and those who care for them

What does the data come from?

  • Inpatient

  • Outpatient

  • Emergency department

  • Ancillary service setting

What type of data is in PCORnet?

  • Demographic

  • Vital Status

  • Vital Sign

  • Insurance status

  • Diagnosis

  • Primary care

  • Location

  • Specialty care

  • Drug exposure (Prescribed and dispensed)

  • Acute care (Emergency department and Inpatient)

  • Encounter and Provider characteristics

  • Procedures perfumed

  • Patient reported outcome

 

Does it include data generated through research studies?

Yes, but only if allowed by IRB-approved protocols, Data Sharing Agreements, and individual Patient consent, as applicable.

What can you use it for?

  • Real world evidence studies

  • Health systems research

  • Pragmatic Clinical trials

  • Studies on how best to engage patients in research

  • Population health research

Can you download dataset?

No, data remained secure behind individual Health Care Organization’s firewall

 

Why PCORnet?

  • Patient Centered Outcome research

  • Health Services Research

 

ACT

 

What is the ACT Network?

The Accrual to Clinical Trials (ACT) Network is a nationwide federation of leading academic research institutions that share aggregate patient counts from electronic health record data. Its development was funded by the NIH through the National Center for Advancing Translational Sciences (NCATS) and the Clinical and Translational Science Award (CTSA) program. It contains over 150 million patient records, and ~90% of the CTSA consortium.

What does the data come from?

Structured EMRs data from leading academic research institutions in the US.

What type of data is in ACT?

  • Demographics

  • Diagnosis

  • Laboratory Test results

  • Medications

  • Procedures

  • Visit details

What is not included in ACT data?

  • Unstructured EMR data

  • Data about:

Past or Current clinical trial participation

Medical adherence

Cost of services

Health Insurance plans

What can you use it for?

  • Explore patient population

  • Find partner sites

  • Check feasibility

  • Demonstrate feasibility for funding proposal and IRB approval

 

Can you download de-identified datasets?

No, only patient counts can be retrieved. Individual patient-level data cannot be accessed through this tool

 

 

Why ACT?

  • Researchers can run real-time queries on de-identified patient data in the ACT Network through the i2b2 tool’s multi-site Shared Health Research Information Network (SHRINE).

  • The ACT Network is HIPAA compliant and pre-approved by the University of Utah’s Institutional Review Board (IRB) and does not require study-specific IRB approval.

 

N3C

What is N3C?

The N3C represents a collaborative vision for a national data resource that will turn data into the knowledge that is urgently needed to address the COVID-19 pandemic. The N3C is systematically collecting data derived from electronic health records from different institutions and harmonizing these data in the NCATS N3C Data Enclave, a centralized resource available for collaborative research.

Where does the data come from?

  • Health care organization’s EMR

  • Health Care plans

What types of data are in N3C Enclave?

  • Real world data from patients who were tested for COVID-19

  • Those whose symptoms are consistent with COVID-19,

  • data from individuals infected with pathogens such as SARS 1, MERS and H1N1,

 

The data includes information such as:

  • Demographics

  • Symptoms

  • Lab test results

  • Procedures

  • Medications

  • Medical conditions

  • Physical measurements and more.

What can you do with N3C?

  • Design of clinical studies

  • Clinical trials

  • Facilitating the identification of effective interventions

  • Informing care decisions.

 

What is not included in N3C data?

Data not collected specifically for COVID-19 related issues

What level of data can you access?

  • Limited Data Set (LDS): Consists of patient data that retain the following protected health information —

    • dates of service

    • patient ZIP code

  • De-identified Data Set: Consists of patient data from the LDS with the following changes —

    • Dates of service are algorithmically shifted to protect patient privacy.

    • Patient ZIP codes are truncated to the first three digits or removed entirely if the ZIP code represents fewer than 20,000 individuals or represents Tribal lands.

  • Synthetic Data Set: Consists of data that are computationally derived from the LDS and that resemble patient information statistically but are not actual patient data.

 

Can you download dataset?

No, the data resides and remains in the NCATS environment. Approved users can analyze data only within the platform.

 

Why N3C?

  • Data collected specifically for Covid-19 research.

  • The largest collection of COVID-19 related data

 

How to get started

 

  1. To get started, visit our website at: https://ctsi.utah.edu/cores-and-services/bmic/cohort-query-tools.

  2. fill out our Cohort Request Form and a member of the Biomedical Informatics Core user services will get back to you.

  3. For questions or more information, please contact us at: HelpDesk@ccts.utah.edu