Networks & Knowledgebases
Transformative Datasets: Explore transformative datasets
Research Networks: Explore research networks
Research Network Comparison: Compares the overall research networks and dynamics.
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View Data Sets
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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
Piloting
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
Piloting
Bob McMurray, Camille Dunn Johnson, Jake Oleson
SDOH Knowledgebase
In development
Martha Carvour, Charisse Madlock, Donna Santillan
Oncology Knowledge Base
Planning
Ken Nepple
SDOH Knowledgebase
Planning
Martha Carvour, Charisse Madlock, Donna Santillan
Datamarts, Knowledgebases & Transformative Datasets
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Research Collaborative Networks
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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) To unlock and exchange corporate data for public good, new types of public private partnerships are emerging: Data Collaboratives. The Data Collaboratives Research Network aims to connect researchers from around the globe working to deepen our understanding of how Data Collaboratives work (or don't work) and translate those insights into practical recommendations moving forward. 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 Networks
Research Network Comparison
Comparison View
Comparison View
| 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 |
| Example Network Name | RARE Data Repository is a comprehensive database of deidentified electronic health records developed by academic heathcare centers that focuses on rare autoimmune dieases | Faculty at UIowa or Trainees with a UIowa faculty mentor | Proof of Citi Training, HIPAA training. Submit a formal request, | Yes, $7500 per query | Submit a request through the front door https://www.frontdoorrequest.edu/datarequest | De-identified (dateshifted) | Proof of Citi Training, HIPAA training for all research team members accessing | Signed institutional DTA and DUA |
| 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 |
| 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 |
| 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 |
| 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 | Step 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 | Info comming soon | |||||||
| N3C Clinical- Renal Enclave | Info comming soon | |||||||
| N3C Clinical-Cancer Enclave | Info comming soon |