CCTS Informatics offers three levels of clinical data:
| Level 1 – Summary Data
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Level 2 – Limited (De-identified) Detailed Data
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Level 3 – Fully Identified Detailed Data (only accessible through an Analyst)
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i2b2 Self-Service Data Access
i2b2 Self-Service Description I2b2 (Informatics for Integrating Biology and the Bedside) is an NIH-funded National Center for Biomedical Computing based at Partners HealthCare System, that provides clinical researchers with self-service access to aggregates and HIPAA Limited Dataset derived from the electronic health record. This enables researcher determine the existence of patient set that meet certain criteria for cohort feasibility and analysis, respectively. Data Type Significant* reflection of EHR structured dataFact Types include allergy data, billed charges, biospecimen data, blood pressure, BMI and waist, cancer registry, clinical diagnosis, consult orders, diagnosis-related group (DRG), encounter insurance, encounter service, height, weight, immunizations, lab panels, lab powerplans, labs, medications, microbiology, select powernotes, problems, procedures (CPTs, ICD9/10), radiology events, social history, surgery data, etc. Who can access UAB Faculty and Staff, CCTS Partners Patient Population UAB Medicine Results HIPAA Limited Data Aggregate Counts Downloadable Yes IRB Requirement ** No Individual IRB Approval required Cost to Use CCTS/Informatics Institute Supported i2b2
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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. -
Analyst-facilitated Data Access
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) -
TriNetX Research(TM) Data Access
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 Contact
CCTS
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) -
N3C Data Access
National COVID Cohort Collaborative (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
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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 -
ACT Network Data Access
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
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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.
*NOTE: It is possible that funding agencies or journal publishers may require documentation of IRB approval regardless of UAB IRB policy. If so,