Find & Access Data

Doctor holding a tablet with health informatics icons overlaid

Access clinical, genomics, and biospecimen data for your research. 

CTSI’s Best Practices Integrated Informatics Core (BPIC) gives University of Minnesota researchers access to high-quality data for their research.

How data can be used

  • Study feasibility
  • Retrospective and observational studies
  • Recruitment
  • Operational or quality improvement projects (non-research)
  • Data feeds
  • Education and fundraising

Office hours

Tuesdays 1:00-3:00pm
Thursdays 1:00-3:00pm (by appointment)

Office hours are held virtually, and can be accessed by contacting the Clinical Research Support Center (CRSC):

[email protected]
612-625-4000

Data sources and networks

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Data sources

Data sources

Academic Health Center Information Exchange (AHC-IE)

Clinical Data Repository (CDR)

EHRs of more than 4.5 million patients seen at 8 hospitals and more than 40 clinics. Data is available for hospital visits starting in 2011; for Fairview Health Services clinic visits from 2005; and for University of Minnesota Physicians clinic visits starting from 2011. All start dates are approximate and depend on the date for the adoption of Epic® at each particular site.

Conveys the clinical data repository contains data about patients (problem list, demographics, vital status, vaccines, surgical history, medical history) and encounters (procedures, orders, vitals and observations, medications, labs, encounter info, location, social history, admission/discharge, provider, diagnoses)
For each patient, data is available regarding the patient's demographics (age, gender, language, etc.), medical history, problem list, allergies, immunizations, outpatient vitals, diagnoses, procedures, medications, lab tests, visit locations, providers, provider specialties, and more.
Genomics data

Tumor (Somatic) Data and Germline Data

Fairview Tumor Registry

Minnesota Cancer Surveillance System (NAACCR) 

CVIS

Discrete clinical data from Fairview Cath Labs

Optima/PaceArt

Cardiac medical devices interrogation data

Xcelera/Echo

Discrete data from the cardiology image management system

UMP Flowcast

Professional billing data (e.g., diagnoses, procedures, departments) for UMP providers

COVID-19 Registry

De-identified electronic medical records of COVID-19 patients as well as those with related conditions and symptoms. COVID-19 registry inclusion criteria.

Masonic Cancer Center Data Registries and Repositories

  • Bone Marrow Transplant Research database (BMT): Captures post-transplant outcomes for BMT patients
  • Laboratory information management system (LIMS): Subjects’ samples data (number of aliquots, analyte, etc.)
  • FreezerWorks: Research samples inventory (freezer name, shelf, rows, box etc.)

BigMouth Network

Oral health records of more than 4.3 million consenting patients from institutions around the country.

OnCore® enterprise CTMS

Clinical Trial Data

Dental Records

AxiUm dental records from the University of Minnesota School of Dentistry

Minnesota Death Index

Minnesota Department of Health death records issued from 2011 to present for deceased individuals who were born in Minnesota, have died in Minnesota, or have ever had a permanent address in the state.

IBM MarketScan®

The University of Minnesota has obtained an institutional license to access IBM MarketScan® Commercial Claims and Encounters and Medicare Supplemental databases for years 2013 to 2017. The current license enables access to these data for approved researchers until May 2022.

MarketScan data provide claims (medical, prescription drug purchases, physician encounters, and hospital stays for the population as well as insurance enrollment) for a large population of commercially insured patients and Medicare beneficiaries with supplemental health coverage.

For more details about access to this data, fees, and restrictions, please refer to the Data Use Agreement Document.

Spatial Data: 

  • Patient records are geocoded and enhanced with latitude / longitude / block data elements
  • Census data at the block group level from the 2010 Census. 
  • The Clinical EMR data is geocoded and enhanced latitude / longitude / block data elements

UMLS Data

Standard Terminology and code sets including ICD-9/10, LOINC, NDF-RT, RxNorm, CPT, HCPCS

Other

Datasets obtained by Researchers (e.g., OptumLabs, AHRQ/HCUP, CMS, VA, etc.) 

Data sharing networks

Data sharing networks

The CTSI Informatics core participates in several data sharing networks, the goal of which is to facilitate and streamline multi-site clinical research.

Submit a BPIC consultation request to learn how data sharing networks can help your research.

Accrual to Clinical Trials (ACT)
  • Supporting cohort identification across 21 sites (approximately 40M patients)
  • Contact us to query the NCATS-ACT Network
MARCH
  • Offers investigators a streamlined infrastructure for undertaking studies that are better served at multiple sites. 
TriNetX
  • Provides anonymized cohort search over UMN data to major Pharmas so that new trials are efficiently initiated.

More about the data request process

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Who can request

Who can request clinical data?

User authorization

Each partner manages its own process for authorizing its users, but the requirements generally include that you are an employee in good standing, have completed HIPAA training, and have signed an attestation form in which you agree to terms for use of the data (e.g. you will only use the data for the purposes specified in the original request form). If you are affiliated with more than one of the partners, your authorization will be via the affiliation most relevant to your data request. It is not your responsibility to ensure your authorization before submitting a request; we will verify your authorization once your request has been submitted.

External collaborators

External collaborators cannot request data themselves, but qualified University-affiliated individuals or departments can be granted access in some cases. To do so, a University member must secure a sponsored guest x500 account for their external collaborator. This is a free service that can be requested via the Office of Information Technology

More information for students and employees of UMN

Addressing the following requirements as soon as possible will allow us to deliver data to you more quickly:

HIPAA training
  • The University's HIPAA Privacy and Data Security Training program consists of four separate online courses that are part of the "Public Jobs: Private Data" training program.
  • If you've completed the training, you do not need to re-take it. A record of all training completed while at the University is available online through the Training History link at the MyU website. You also can contact the Health Information Privacy and Security Office at [email protected].
Attestation form
  • You must provide attestation to indicate that you comply with the terms of AHC Information Exchange (IE) data use. To attest, complete this short online form, which will require that you sign in with your university ID (x500). Your attestation will be valid for one year. 

IRB approval guidelines

Do I need IRB approval?

Research

IRB review and approval is required for research falling under the federal definition of human subjects research. IRB approval is required for data requests that require identifiable private information and involve a systematic investigation designed to contribute to generalizable knowledge. Visit the U of M's IRB website for more guidance (e.g., Does My Research Need IRB Review?) and up-to-date forms, including the Change in Protocol form and Change in Personnel forms.

Activities preparatory to research

Data requests to determine study feasibility or plans for participant recruitment do NOT require IRB review. Participant recruitment itself, however, does need IRB approval. For more information on the disclosure of PHI for activities preparatory to research, see the related Administrative Policy

Non-research activities

If you need data in support of clinical operations or quality improvements, you do not need IRB approval however, approval by a Data Steward is required. 

Recruiting participants

How can I use my data to recruit participants?

If you would like to send recruitment letters to the patients you have identified with the assistance of  BPIC, we will work with you and Fairview Research Administration (FRA) to coordinate such a mailing.

  • When you submit your data request to BPIC, let us know that you plan to send out recruitment letters via Fairview Research Administration.
  • Fairview will send out recruitment letters on your behalf provided that your study will occur at Fairview or the University of Minnesota and that you have UMN IRB approval for your study. Read the Fairview Research Recruitment Mailing Guidelines.
  • Contact FRA at [email protected] as early as possible to alert them to your plans for a recruitment mailing.

Policies and procedures

Support and technical assistance

Support

How do I get informatics support?

In addition to providing data, experts from BPIC also can help you work with that data. Contact us at [email protected] if you want to:

  • Get help managing the data you received through our data request process.
  • Get support for the informatics aspects of your grant applications.
  • Learn about informatics experts beyond CTSI.

Consultations are available at no charge to researchers at the University of Minnesota, Fairview, and University of Minnesota Physicians. Request a consultation via our website or by submitting a request form directly.

Training

Contact [email protected] to set up a training session or to learn more about our services, data and tools.

Who do I contact if I need help?

General questions and assistance?

Please contact [email protected]

Forgot your password?

Password assistance for University of Minnesota students and staff, visit [email protected]

x500:
Use your University of Minnesota x500 username and password to access: i2b2, SHRINE, Duo, Box and vpn

AD Account:
Access the Data Shelter via remote desktop using your AD username and password.

Rates

Initial consultations:
Free 

Grant proposal preparation:
Free

Services:
$120/hour: Internal hourly rate
$95/hour: For Cancer Center members

Rate details

Contact

Gretchen Sieger
Director of Operations, Clinical Informatics
[email protected]

Steve Johnson, PhD
Scientific Director, Clinical Informatics
[email protected]

Melissa Hansen
Research Navigator
[email protected]
612-625-CTSI (2874)

[email protected]

BPIC staff list