Data Access & Knowledge Bases Overview
- Data Liaison Directory: Search the directory for help with your data driven research and analysis
- TriNetX Self Service Tool: Intuitive query builder helping researchers, explore data, build cohorts and compare outcomes
- OHDSI ATLAS: Web-based platform for OMOP database querying, vocabulary browsing, cohort creation, and population-level analysis
- Data Enclave: Clinical research data storage, connects to HPC and IDAS
- Data Request: Request Clinical Data for Research
- EMERSE: Electronic Medical Record Search Engine - Software that helps researchers accurately find and extract import patient details
- Transformative Datasets: Explore transformative datasets
- Research Networks: Explore research Networks
- Research Network Comparison: Compares the overall research networks and dynamics
Data Liaison Directory
Name | Role | College | Keywords |
| Asher Hoberg | Co-Lead Data Access Team | ICTS | Primary Liaison Medicine |
| Tara Carr | Staff Data Liaison | ICTS | Secondary Liaison Medicine |
| Donna Santillan | Faculty Data Liaison | CCOM | Primary Liaison Medicine, Intergenerational Knowledge Base |
| Brian Gryzlak | Staff Data Liaison | COPH | Primary Liaison College of Public Health, PCORNet |
| Ryan Carnahan | Faculty Data Liaison | COPH | Primary Liaison College of Public Health, |
| Mary Sarrazin | Faculty Data Liaison | CCOM | Primary Liaison Medicine |
| Scott Egerton | Staff Data Liaison | COP | Primary Liaison Pharmacy |
| Chuck McBrearty | Faculty Data Liaison | COD | Primary Liaison College of Dentistry, BigMouth, Dental Medicial Datamart |
| Jacob Michaelson | Faculty Data Liaison | CCOM | Primary Liaison Medicine |
| Karen Dunn Lopez | Faculty Data Liaison | CON | Primary Liaison Nursing, Nursing Care Dataset |
| Cole Chapman | Faculty Data Liaison | COP | Primary Liaison Pharmacy |
| Erliang Zeng | Faculty Data Liaison | COD | Primary Liaison Dentistry |
| Jessica Wolf | Staff Data Liaison | CON | Primary Liaison Nursing |
| Brad McDowell | Staff Data Liaison | CCOM | Primary Liaison Cancer Center |
| Robert Holmes | Staff Data Liaison | ICTS | Secondary Liaison Medicine |
| Andreas Wahle | Ad-Hoc Faculty Data Liaison | COE | Primary Liaison Engineering, Imaging |
| Patrick Fan | Faculty Data Liaison | COB | Primary Liaison Business |
| Jacob Oleson | Faculty Data Liaison | COPH | Wellmark Repository |
| Guadalupe Canahuate | Faculty Data Liaison | COE | Primary Liaison Engineering |
| Brian Heil | Staff Data Liaison | COB | Primary Liaison Business |
| Kishlay Jha | Faculty Data Liaison | COE | Primary Liaison Engineering, Imaging |
| Alberto Segre | Faculty Data Liaison | CLAS | Primary Liaison College of Liberal Arts and Sciences |
| Jacob Michaelson | Faculty Data Liaison | CCOM | Primary Liaison Medicine, Neurodevelopmental Registry |
TriNetX Self Service Tool
TriNetX with University of Iowa Health Care provides researchers with the ability to securely explore limited, de-identified data from the Electronic Health Record.
- This is a web-based platform that allows the user to specify inclusion and exclusion criteria to find populations of interest.
- This tool is most useful for identification of patient cohorts for preparation to research.
- ICTS provides TriNetX at no cost to University of Iowa Faculty, Staff and Students.
Comparing TriNetX & SlicerDicer
| TriNetX | SlicerDicer |
Who can access? | Any University of Iowa faculty, staff, or student who is doing clinical research | Anyone with access to Epic |
Date Range of the data | 1/1/2010 to present | 0 |
Refresh cycle | Weekly | Nightly |
Types of data | Demographics, diagnoses, procedures, medications, labs, vitals, visits, dental, oncology | Many different data models and data types |
Ability to access identifiable data | Yes, with assistance from the ICTS Biomedical Informatics Core | For clinical access, you can see data for your patients For research:
|
ATLAS
OHDSI (Observational Health Data Sciences and Informatics) ATLAS is is a web-based integrated platform for database exploration, standardized vocabulary browsing, cohort definition, and population-leel analysis that can be used to query an industry-standard OMOP database.
Data Enclave
This computational resource provides storage appropriate for use with campus tools Argon (HPC) and Interactive Data Analytics Service (IDAS) when using University of Iowa Health Care clinical data.
EHR & EDW4R Clinical Data Request
This service provides access to clinical data for scientific research from our electronic health record (EHR) and Enterprise Data Warehouse or Research (EDW4R).
Electronic Medical Record Search Engine (EMERSE)
EMERSE is software that helps researchers accurately find important patient details like diagnoses, medications, procedures, and complications from clinical notes. ICTS-BMI can use this tool to identify computable phenotypes built on these unstructured data elements. EMERSE is an information retrieval tool.
Network & Knowledgebases
Datamarts, Knowledgebases & Transformative Datasets
Transformative Data Sets | Description | Status | Lead & Champion |
|---|---|---|---|
Intergenerational Health Knowledgebase (IHK) | This datamart is a collaboration between Neonatal, Epidemiology, and OB-GYN research groups to come up with a core set of mother/baby/pregnancy information that would be across these groups for research | Live | Donna Santillan |
Neurodevelopmental Registry (NDVR) | Provides a comprehensive set of data and information on UIHC patients who are at increased risk for mental illness and to understand outcomes for this population | Live | Jake Michaelson |
Dental Medical Data Mart (DMDM) | Integration of UI dental data captured in axiUm with UI clinical data (Epic) – accessible via TriNetX. This datamart is also integrated with NAACCR and SSDMF data sources. | Live | Ehrliang Zeng , Chuck McBrearty |
Nursing Care Dataset (NCD) | Will provide a comprehensive set of data and information on nursing delivered care and care outcomes mapped to NIC, NOC, and NANDA concepts | Live | Karen Dunn Lopez |
Cochlear Implant Knowledgebase (CIP50) | A collaboration between Otolaryngology, Psychological and Brain Sciences to integrate data across multiple research projects into a single data resource. This data mart will contain integrated information regarding research study details, research design, comprehensive information on research participants, demographics | Live | Bob McMurray, Camille Dunn Johnson, Jake Oleson |
Impact Across Geographies Knowledgebase | Linking of data to the data features in which all Iowan's are born, grow, live, work, and age that influence their overall health and well-being. Factors often interact, and changes in one area can affect others, shaping a person's long-term health trajectory. This enables connection to data features that include access to fresh food, nearest healthcare, housing, education, green space, water, public safety. | In development | Martha Carvour, Charisse Madlock, Donna Santillan |
Oncology Knowledge Base |
| Planning | Ken Nepple |
Imaging Knowledgebase |
| Planning | Sean Fain |
Research Networks
| Network | Description | Video available w/Hawkid | Lead & Champion |
|---|---|---|---|
| Greater Plains Collaborative (GPC) PCORNET | The Greater Plains Collaborative (GPC) Iowa Research Core provides leadership for the University of Iowa’s participation in a network of 12 leading medical centers in eight states committed to a shared vision of improving healthcare delivery through ongoing learning, adopting of evidence-based practices, and active research dissemination. The National Patient-Centered Clinical Research Network (PCORNET) is a large, interconnected network of healthcare systems and researchers taht aims to improve healthcare and advance medical knowledge by facilitating patient-centered outcomes research. | IHDR Seminar: Practical Guide to Using Real World Data from PCORnet | Betsy Chrischilles, Brian Gryzlak |
| TriNetX Research | The TriNetX company partners with leading healthcare organizations around the world to bring together the most comprehensive, privacy-compliant real-world data network. TriNetX with University of Iowa Health Care provides researchers with the ability to securely explore limited, de-identified data from the Electronic Health Record. This is a web-based platform that allows the user to specify inclusion and exclusion criteria to find populations of interest. This tool is most useful for identification of patient cohorts for preparation to research. | IHDR Seminar: Jump Start your Research using TriNetX Analytics | Heath Davis, Asher Hoberg |
| National COVID Cohort Collaborative (N3C) | National COVID Cohort Collaborative (N3C) is a collaboration among the NCATS-supported Clinical and Translational Science Awards (CTSA) Program hubs, distributed clinical data networks (PCORnet, OHDSI, ACT, TriNetX), and other partner organizations, with overall stewardship by NIH’s National Center for Advancing Translational Sciences (NCATS). The N3C aims to improve the efficiency and accessibility of analyses with COVID-19 clinical data, expand our ability to analyze and understand COVID, and demonstrate a novel approach for collaborative data sharing. | Heath Davis | |
| Data Collaborative Research Network (DCRN) | The Data Collaborative research Network is an agreement between University of Iowa, University of Utah and Medical College of Wisconsin shared through the TriNetX Research Network. | Heath Davis, Asher Hoberg | |
| ORIEN | The Oncology Research Information Exchange Network (ORIEN) is a national initiative among leading cancer centers that promotes collaboration to drive research and discovery of personalized treatments for cancer. | IHDR Seminar: Using Data from the ORIEN Research Network | George Weiner , Kristen Coleman |
| Cosmos | Cosmos is a dataset created in collaboration with a community of health systems using Epic and is designed to improve patient care. | Jim Blum , Pinkrose Hamilton | |
| All of Us Research Hub | The All of Us Research Program is one of the largest biomedical data resources of its kind. The Research Hub is home to All of Us data, research tools, and research projects. | IHDR Seminar: All of Us Research Program | Alejandro Comellas, Charisse Madlock, Heath Davis |
| BigMouth Dental Data Repository | The BigMouth Dental Data Repository is a comprehensive database of electronic health records provided by dental schools in a partially de-identified manner. Multiple, major dental schools are currently participating with Iowa. This repository can be used for high-powered research using information collected from each of the participating institutions, and is a promising avenue for big data research. | IHDR Seminar: BigMouth Dental Repository | Chuck McBrearty, Ehrliang Zeng |
| Wellmark Data Repository | The partnership between Wellmark and the Center for Public Health Statistics (CPHS) has provided many years of support to members of the UI research community involved in research based on health claims data. In addition to investigator-driven research, the Wellmark Data Repository may also be used for appropriate educational purposes of students. | IHDR Seminar: Use of the Wellmark Data Repository | Jacob Oleson |
Research Network Comparison
| Network | Network Purpose | Network Access Eligibility | Prerequisites to gain access | Budget required to access | Request Process | What levels of data are available | Governance, compliance is required | Agreements required |
|---|---|---|---|---|---|---|---|---|
| PCORNet | PCORnet helps researchers understand how treatments work for diverse populations and provides a uniform and standardized system of providing data. Data within our own health care system is just not heterogenous enough or big enough to answer researchers’ questions that doctors and patients need answers to. PCORnet combines networks from different healthcare systems to create bigger and more diverse populations to help provide researchers with meaningful data. | The network is open to researchers, patient groups, industry, and agencies. | Yes, depends on the request | Submit a request through the front door https://www.frontdoorrequest.edu/datarequest . The coordinating center reviews the question and consults with the requestor about next steps | Identified, limited, and de indentified data | IRB: prep-to-research aggregate data covered under a single IRB; specific projects with low-level data require project specific IRB submission (often HSRD for data-only studies). DSA: May be covered under PCORnet-wide data sharing agreement for data-only studies. Specific projects may require project specific DSA in site subcontracts. | ||
| ORIEN | ORIEN is an alliance of cancer centers, powered by Aster Insights, working in close collaboration to accomplish more in the fight against cancer. They provide clinical data from the electronic medical record, samples to obtain whole exome sequencing, and it also gets RNA seq data. | Any University of Iowa faculty, staff, resident, fellow, or student. | No | Submit BioMER Request form | De-identified | 1) Must comply with ORIEN Master Collaboration Agreement 2)Human Subjects Research Determination form 3) Must be existing de-identified, coded data 4) Must follow the original research plan submitted, any modifications will require a resubmission 5) Sites with at least one case must be provided with an opportunity for authorship and be consulted regarding any publications, abstracts, etc related to the project | Human Subjects Research Determination Form. Usually an IRB. | |
| Wellmark | The purpose of the Wellmark repository is to make it easier for researchers to obtain claim data from the company. It holds all of its data in one place for the university. This eliminates the struggle of obtaining and renewing contracts for researchers to use Wellmark data. The Center of Public Health Statistics holds the data, and researchers at UIOWA can access said data. | Only UIOWA members. All students need a PI. | Must be a UIOWA member, complete the Individual User Agreements, complete any compliances, and submit your HawkID to Workflow. | Yes | 1)Applications are reviewed by IPHPRP and then forwarded to Wellmark 2) Wellmark approval is received by IPHPRP 3) After approval, a secure project folder is created on the server, and appropriate data sets are moved to that folder, and access is enabled | De-identifed | HIPPA and data security compliance. | Individual User Agreements. Acknowledge the terms of use of the repository and note any potential conflicts of intere |
| TriNetX & TriNetX Analytics | It was a web-based platform that allows researchers to go in and search for patient populations using data from electronic health records. People can use it for study feasibility and find populations of interest and population sizes. Can also be used for grant prep and cohort identification. | Be a student/staff at UIOWA. | Be a student/staff at UIOWA. It has no cost, and you can obtain an account through the Research Service portal. | No | 1) The researcher submits a data request 2) The researcher completes a survey through REDCAP specifying the study details and providing the IRB 3) An ICTS member reaches out to consult with the researcher 4) They prepare and pull your data from TriNetX 5) Once everything is verified, the data gets delivered to the researchers | De-identifed | HIPPAA, IRB, and Data Use Agreement. | Data Use Agreement |
| All of Us | The purpose of ALL OF US is to accelerate health research and medical breakthroughs, enabling individualized prevention, treatment, and care for all of us. It delivers one of the largest, richest, biomedical datasets of its kind that is broadly available and secure. It really focuses on rural environments with Kansas, Missouri, Nebraska, and Iowa being the main cohort. If participants move from these locations, they will still be available as participants. | Anyone can access the data source, but there are levels of access | Your institution must have signed a Data Use and Registration Agreement (DURA) and you must have applied for the data passport. Iowa has signed this agreement. | no | 1) Route a non-monetary routing form to DSP using this link. https://dsp.research.uiowa.edu/routing-form-and-process | Limited and de-identified | You need to complete the All of Us Responsible Conduct of Research Training. Additionally, you can complete the All of Us Controlled Tier training | Data Use and Registration Agreement (DURA). |
| BigMouth | Research database with a combined 13 dental schools EHR. | Access is available to anyone, but the access has to be made in conjunction with a dental school | None | Not for use, but if data is extracted there is a charge | All data requests are reviewed the Big Mouth team. The PI has to meet with the team and explain the project and answer any questions. | De-identified only | IRB | None for the researchers as long as they have local IRB |
| N3C Covid | The National COVID Cohort Collaborative (N3C) is a large-scale data initiative in the U.S. that aggregates and harmonizes electronic health records from multiple institutions to support COVID-19 research. It enables researchers to study the virus's impact, risk factors, treatments, and outcomes using one of the largest centralized clinical datasets available. | The organization must have a signed DUA with NCATS. University of Iowa has this agreement. | 1) NIH security training: covers topics like information security, privacy awareness, and emergency preparedness (takes ~60–90 minutes)NCBI+3ncats.nih.gov+3ncats.nih.gov+3. 2) Human subjects research protection training (e.g., CITI or NIH) is needed for access to De‑identified (Level 2) and Limited Data Sets (Level 3) | No | Within the Enclave, you must submit a DUR for each project. | Access levels vary depending on the sensitivity of the data requested (limited, de-identified, or synthetic). | IRB | If you’re seeking access to Limited Data Set (which includes dates and ZIP codes), you must provide an IRB determination letter from your institution |
| N3C Clinical- Renal Enclave | Info coming soon | |||||||
| N3C Clinical-Cancer Enclave | Info coming soon |
Questions?
Help the Institute for Clinical and Translational Science at the University of Iowa continue making new strides in medical research by citing the NIH CTSA program grant UM1TR004403.