-
ACT Network
Description ACT (SHRINE) is HIPAA-compliant and IRB-approved self-service platform that enables cohort discovery using an open access to national network of leading academic medical research center. This tool enable researchers to generate aggregate de-identify patient count by querying across approved or partnered institutions electronic medical record systems based on an investigator’s real time iterative searches. Data Type Structured data (labs, meds, procedures, billing codes) Who can access UAB Faculty and Staff, CCTS Partners (coming soon) Patient Population UAB + over 40 CTSAs Results Aggregate Counts Downloadable Yes IRB Requirement **No individual IRB Approval required Cost to Use CCTS/Informatics Institute Supported ACT Network Login
EHR, Electronic Health Record; HCO, Healthcare Organization; PHI, Protected Health Information; PII, Personally identifiable information, HIPAA, Health Insurance Portability and Accountability Act; CTSA, Clinical and Translational Science Award(ee)
** Permitted Users, covered entities, and any Authorized Party on User's behalf listed in (Research Title/Grant Title)may use i2b2 self-service Limited Data Sets only for the purposes which shall be limited to research, public health activities, and health care operations as defined in the HIPAA Privacy Rule (per IRB protocol E160105006) and not for no other purpose. -
All Of Us Workbench
Part of the All of Us Research Hub, which stores health data from a diverse group of participants from across the United States, the All of Us Workbench is a cloud-based platform where researchers can access and analyze All of Us data, including clinical phenotype, wearable data, whole genome sequences, genotypes and more!
View Event Recording with Successful Use Cases
For access and/or questions, contact Lynae Hanks
How to get access:
1. See if your institution has signed a data use agreement. Check out the list here, and if you don’t see your institution listed fill out this form.
2. Register as a researcher. Once the Data Use and Registration agreement is in place, apply for access by setting up your account here.
3. Connect your new account to your eRACommons.
4. Complete the All of Us responsible conduct of research training and sign the data user code of conduct. -
DataLENS - Analyst-facilitated Data Access
Description: The CCTS and Informatics Institute work together to provide robust data exports from the UAB Medicine electronic health record as guided by investigator-defined queries based on experimental design for secondary data analysis and to enable prospective recruitment for clinical investigation. The EDW houses mainly data that are extracted from Cerner (IMPACT) to support researchers during hypothesis generation, feasibility, preliminary data, grant submission, recruitment, and analysis. The EDW includes a wider breadth of data as compared to i2b2. Data Type: EHR, inclusively Who can access: Designated Informatics Honest Brokers provide data to anyone based on policy. IRB Protocol required for PHI or LDS data access Patient Population: UAB Medicine Results: PHI / PII HIPAA Limited Data Aggregate Counts Downloadable: Yes (with assistance) IRB Requirement: Approved Investigator-initiated protocol for PHI or LDS Datasets Cost to Use: CCTS/Informatics Institute Supported; Budget in grants Log in to DataLENS EHR, Electronic Health Record; HCO, Healthcare Organization; PHI, Protected Health Information; PII, Personally identifiable information, HIPAA, Health Insurance Portability and Accountability Act; CTSA, Clinical and Translational Science Award(ee)
How to log into DataLENS:
1. Go to DataLENS at https://datalens.hs.uab.edu/projectexplorer
2. Log in using @uabmc.edu account if possible. If you do not have @uabmc.edu account, use your @uab.edu account. Please email ResearchData@uabmc.edu if you encounter any issue logging in.Requesting Datasets:
- After logging in, go to “My Data Request” tab to create new request by clicking “+NEW DATA REQUEST” button.
- Fill out the data request form.
- Project Name: any data request needs to be tied to a project. If you have not create any project, you can create new project by clicking the [+] button.
- Select Cohorts: Please select your query that you ran in i2b2 that defines your cohort of the request. This is optional.
- Select Protocols: Please select your IRB number from the dropdown list if you are requesting PHI. This is optional.
- Title: Title of your data request
- Description: detailed description of your data request. Below key information are usually needed in a data request:
i. Define your study population. (e.g. African American women over 50 years old with type 2 diabetes, white males diagnosed with myocardial infection in past 60 days.)
ii. What data do you want on your study population? Click here for a list of searchable data variables.
iii. What time frame should your data cover? (e.g. past 3 months, 2011-2016) - Status: This is a read only field and the status of your request will updated when analysts begin working on your request.
- Priority: This is a read only field. Normal priority by default. If your request is urgent, please indicate it in the Description along with reason and justification.
- Assignee: This is a read only field. You should see analyst name when it is worked on.
- Frequency: How often would you like this data to be refreshed and delivered? It is a one-time request by default.
- Requester Name: Type in <Last Name>, <First Name> to search for matches in database. By default, it will be the person who submitted the request.
- Attach Files: Please attach IRB approval letter and Human Subjects Protocol (or EForm of e-Portfolio) if you are requesting PHI. This will speed up our validating process. For large files, please wait until you see an “upload successful” message appears on the top right corner of the screen.
- Documents: You should be able to see any documents you have uploaded previously.
- Click “Submit” button to complete request creation process. If you have attached files, please make sure you see the “upload successful” message before you click “Submit” button. This will prevent loss of the attachments.
- Our analysts will process your request in the order of it is received. You may check the Status in your request. Once completed, the dataset files will be delivered in the “Clinical Datasets” tab.
How to get help:
Please email ResearchData@uabmc.edu if you encounter any issue logging in and use this registration form for data requests should you need it.
-
i2b2 (Informatics for Integrating Biology and the Bedside)
What is i2b2?
i2b2 (Informatics for Integrating Biology and the Bedside) is an NIH-funded National Center for Biomedical Computing based at Partners HealthCare System. i2b2 was developed as a scalable informatics framework designed for translational research. i2b2 was primarily designed for cohort identification, allowing users to perform an enterprise-wide search on a de-identified repository of health information to determine the existence of a set of patients meeting certain criteria.
Access to clinical data through i2b2 involves several easy steps. After setting up their acces, authorized CCTS i2b2 users can access the system to obtain:- Summary data sets (useful for finding aggregate population characteristics or for estimating the number of patients at UAB who might be eligible as subjects for a planned clinical study)
- Detailed data sets (useful for enrolling subjects in a study or to explore research questions using retrospective data)
Access i2b2
Access to i2b2 is available to authorized CCTS users and UAB personnel via BlazerID, but also requires validation of several other items. Detailed instructions can be found here.
1. Successful completion of at least one of the following courses
- HIPAA Privacy/Security Training
- IRB Investigator 101 Initial Training
- IRB Investigator 101 Continuing Ed
2. Acknowledgement of Restriction on the Use of Limited Data Sets
- Log-on to the UAB Learning Management System
- Search the catalog for "Acknowledgement of Restrictions on the use of limited data sets" and enroll in this course
(Note: This must be completed once a year.)
3. Your access will be activated within 48 hours of receiving your request if all applicable requirements are complete.Support Materials:
- i2b2 Manual
- i2b2 Frequently Asked Questions
For those researchers who prefer the flexibility of learning online and/or who wish to refresh their i2b2 knowledge, CCTS offers i2b2 training videos.If you experience any difficulty please contact Matt Wyatt
-
N3C
Description: The N3C initiative creates a national, centralized, secure portal for COVID-19 research via secondary data analysis of clinical data. N3C is a partnership among several HHS agencies, the CTSA program, and the distributed clinical data networks PCORnet, OHDSI, ACT/i2b2, and TriNetX. Data Type: Structured data related to COVID-19 (e.g., labs, meds, procedures, billing codes)COVID-19 related data (variable list continues to grow):• Person demographics (date of birth, gender, race, ethnicity)• Location (county, state, zip)• Observations (subject history including smoking status, alcohol)• Death (date of death)• Complete Visit History (begin and end dates, Inpatient/Outpatient)• History of Prescriptions (begin and end dates, doses, drug)• History of Device Exposure (X-rays, CT Scans, etc)• Condition Occurrences (All ICD9, ICD10 codes)• Measurement Histories (A1C, Glucose, Blood Pressure, Weight, BMI, Creatinine, etc) Who can access: UAB Faculty, Staff and ***participating Institutions Patient Population: UAB + over 50 HCOs Results: HIPAA Limited Data Aggregate Counts Downloadable: No IRB Requirement: Approved Investigator-initiated protocol Cost to Use: No Charge N3C Login
View an Event Recording with Successful N3C Use CasesFor access and/or questions: Matt Wyatt
EHR, Electronic Health Record; HCO, Healthcare Organization; PHI, Protected Health Information; PII, Personally identifiable information, HIPAA, Health Insurance Portability and Accountability Act; CTSA, Clinical and Translational Science Award(ee)
*** Institutions listed on the N3C website https://covid.cd2h.org/enclave_DUA_signatories -
OneFlorida+
Description: OneFlorida+ Clinical Research Network—part of the Patient-Centered Outcomes Research Institute (PCORI)-funded national clinical data research network (PCORnet)—assembles health data, research expertise and patient insights to drive clinical discoveries that stand to improve health outcomes. Data Type: EHR, inclusively Who can access: UAB Faculty and Staff Patient Population: Select Health Systems in FL, GA and AL Results: HIPAA Limited Data (LDS), Aggregate Counts Downloadable: Yes (with assistance) IRB Requirement: Approved Investigator-initiated protocol required Cost to Use: Determined by project scope OneFL+ Front Door
View an Event Recording with Successful OneFL+ Use CasesFor access and/or questions: Michael Mugavero
-
TriNetX Research
Description: TriNetX Research™ is a suite of real-world data and analytics solutions for use in conducting observational and outcomes research. TriNetX Research combines longitudinal clinical data from its global health research network with powerful, state-of-the-art analytics on a single self-service platform. Data Type: Limited Structured data (e.g., labs, meds, procedures, billing codes) Who can access: UAB Faculty and Staff Patient Population: UAB + over 70 HCOs, spanning 13 countries representing over 100 million patients. Results: HIPAA Limited Data Aggregate Counts Downloadable: Yes IRB Requirement: None for Aggregate data. Approved Investigator-initiated protocol for HIPAA LDS data Cost to Use: Free preparatory to research; Budget in grants View an Event Recording with Successful TriNetX Use Cases For access and/or questions: ccts@uab.edu
EHR, Electronic Health Record; HCO, Healthcare Organization; PHI, Protected Health Information; PII, Personally identifiable information, HIPAA, Health Insurance Portability and Accountability Act; CTSA, Clinical and Translational Science Award(ee)