Table 3.
Types of observational data used and subject area
| Index | Study | Study’s subject area | Data | Description | Category |
|---|---|---|---|---|---|
| 1 | Dickerman et al. [24] | Oncology | CALIBER | The CALIBER platform (https://www.caliberresearch.org/portal) consists of ‘research ready’ variables extracted from specific structured UK EHRs data sources: primary care (CPRD), hospitalizations (HES) and mortality (ONS). | EHRs/EMRs data |
| 2 | García-Albéniz et al. [25] | Oncology | (SEER)-Medicare linked database | The SEER-Medicare database (https://healthcaredelivery.cancer.gov/seermedicare/) consists of cancer patients’ data collected by 17 SEER cancer registries across 12 US states as well as Medicare claims data collected by the Centres for Medicare & Medicaid Services. |
1. Health insurance claims data 2. Patient registry data |
| 3 | Petito et al. [26] | Oncology | (SEER)-Medicare linked database | Explained previously (see row 2). |
1. Health insurance claims data 2. Patient registry data |
| 4 | Dickerman et al. [4] | Oncology | CALIBER | Explained previously (see row 1). | EHRs/EMRs data |
| 5 | Dickerman et al. [27] | Oncology | HPFS | The HPFS (https://sites.sph.harvard.edu/hpfs/) is an ongoing prospective cohort study of over 50,000 US male health professionals aged between 40–75 years at enrolment in 1986. | Cohort study data |
| 6 | Danaei et al. [28] | Cardiology | THIN | The THIN database (https://www.the-health-improvement-network.com/) consists of EHRs data from over 500 primary care practices in the UK. | EHRs/EMRs data |
| 7 | Zhang et al. [29] | Cardiology | USRDS | The USRDS (https://www.usrds.org/) is a national data system that collects data on US patients with disease CKD and ESRD. | Patient registry data |
| 8 | Atkinson et al. [30] | Infectious diseases | COHERE | COHERE (www.cohere.org) is a collaboration of 40 HIV European cohort studies. | Cohort study data |
| 9 | Rojas‑Saunero et al. [31] |
1. Neurology 2. Cardiology |
The Rotterdam study | The Rotterdam study (https://www.ergo-onderzoek.nl/) is an ongoing prospective cohort study that started in 1990 in Ommoord, a suburb of Rotterdam, the Netherlands. As of 2008, the cohort consists of approximately 15,000 subjects aged 45 years and over. | Cohort study data |
| 10 | Maringe et al. [14] | Oncology | NCRAS and secondary administrative records | The NCRAS (https://www.gov.uk/guidance/national-cancer-registration-and-analysis-service-ncras) collects data on cancer patients living in England. | Patient registry data |
| 11 | Gilbert et al. [32] | Psychiatry | Neptune | The Neptune (https://www.dbmi.pitt.edu/services/) system consists of EMRs data. | EHRs/EMRs data |
| 12 | Caniglia et al. [33] | Psychiatry | VACS | The VACS (https://www.vacsp.research.va.gov/CSPEC/Studies/INVESTD-R/Veteran-Aging-Cohort-Study.asp) is an ongoing prospective cohort study of HIV-positive and age/race/site matched control group of HIV-negative US veterans in care, launched in 1997. | Cohort study data |
| 13 | Althunian et al. [34] | Cardiology | CPRD | The CPRD database (https://cprd.com/) consists of EHRs data collected from a UK-wide network of primary care practices. | EHRs/EMRs data |
| 14 | Shaefi et al. [35] | Infectious disease | STOP-COVID | STOP-COVID (https://clinicaltrials.gov/ct2/show/NCT04343898) is a multicentre cohort study of COVID-19 patients (≥ 18 years old) admitted to participating intensive care units across the US. | Cohort study data |
| 15 | Bacic et al. [36] | Oncology | NCDB | The NCDB ( https://www.facs.org/quality-programs/cancer-programs/national-cancer-database/) is a clinical oncology database that collects cancer patients’ hospital registry data from over 1,500 hospitals in the US. | Patient registry data |
| 16 | Rossides et al. [37] | Infectious diseases |
Swedish register data (PDR, NPR, and other registers) |
The Swedish PDR https://www.socialstyrelsen.se/en/statistics-and-data/registers/national-prescribed-drug-register/) contains information about all drug prescriptions dispensed in Sweden since July 2005. The Swedish NPR (https://www.socialstyrelsen.se/en/statistics-and-data/registers/national-patient-register/) contains information on in-patients at public hospitals. | National registry data |
| 17 | Xie et al. [38] | Nephrology | VA databases | VA databases collect data on US veterans who are enrolled in the VA health care system (https://www.va.gov/health-care/). | EHRs/EMRs data |
| 18 | Caniglia et al. [39] | Neurology | The Rotterdam study | Explained previously (see row 9) | Cohort study data |
| 19 | Caniglia et al. [40] | Infectious diseases | HIV -CAUSAL | HIV-CAUSAL (https://causalab.sph.harvard.edu/hiv/) is a collaboration of European and American HIV prospective cohort studies | Cohort study data |
| 20 | Caniglia et al. [41] | Gynaecology and obstetrics | Used data from a birth surveillance study in Botswana | - | Cohort study data |
| 21 | Matthews et al. [42] | Infectious diseases | STOP-COVID | Explained previously (see row14). | Cohort study data |
| 22 | Schmidt et al. [43] | Cardiology | Danish National Patient & Prescription Registers | The Danish National Patient Register contains data on people who have been admitted to somatic (since 1977) ambulatory and emergency (since 1995) hospital departments. The Danish National Prescriptions Registry contains information on all prescription drugs sold in Danish community pharmacies since 1994 [43]. | National registry data |
| 23 | Al-Samkari et al. [44] |
1. Cardiology 2. Infectious diseases |
STOP-COVID | Explained previously (see row 14). | Cohort study data |
| 24 | Mattishent et al. [45] | Cardiology | CPRD | Explained previously (see row 13). | EHRs/EMRs data |
| 25 | Lenain et al. [46] | General surgery | REIN registry | The REIN registry ( https://clinicaltrials.gov/ct2/show/NCT03967808) was set up in 2002. It collects data on ESRD patients on replacement therapy – either dialysis or transplantation -living in metropolitan France or in overseas districts. | Patient registry data |
| 26 | Yiu et al. [47] | Dermatology | BADBIR | The BADBIR database (http://www.badbir.org/) consists of psoriasis patients’ data undergoing treatment with either a biologic drug or a standard anti-psoriatic therapy in the UK and the ROI. | Patient registry data |
| 27 | Wanis et al. [48] | General surgery | SRTR | The SRTR database (https://www.srtr.org/) consists of organ donors, transplant recipients and organ transplant wait-listed candidates’ data in the US, submitted by the Organ Procurement and Transplant Network. | Patient registry data |
| 28 | Lu et al. [49] | Infectious disease | NA-ACCORD | The NA-ACCORD study ( https://naaccord.org/) is a collaboration of North American HIV prospective cohort studies. | Cohort study data |
| 29 | Lyu et al. [50] | Rheumatology | THIN | Explained previously (see row 6). | EHRs/EMRs data |
| 30 | Russell et al. [51] | Oncology | BladderBaSe | BladderBaSe was set up back in 2015. It links information from the SNRUBC with several national healthcare and demographic register [51]. | National registry data |
| 31 | Takeuchi et al. [52] |
1. Urology 2. Infectious diseases |
NDB | NDB collects claims data from almost all Japanese citizens and long-term residents of Japan [52]. | Health insurance claims data |
| 32 | Abrahami et al. [53] | Cardiology | CPRD and ONS | Explained previously (see rows 1 and 13). | EHRs/EMRs data |
| 33 | Secora et al. [54] | Nephrology | GHS | GHS ( https://www.geisinger.org/) is a healthcare provider in Pennsylvania. Its EHR database contains information on more than 3 million patients. | EHRs/EMRs data |
| 34 | Young et al. [55] | Infectious diseases | SHCS | The SHCS ( http://www.shcs.ch/) is an ongoing prospective cohort study of HIV-positive patients (≥ 16 years old) that was launched in 1988. | Cohort study data |
| 35 | Czaja et al. [56] |
1. Cardiology 2. Pediatrics |
CER2 | CER2 (https://dartnet.info/CER2.htm) network has collected EHRs data from over 1 million paediatric patients across 27 states in the US. | EHRs/EMRs data |
| 36 | Keyhani et al. [57] |
1. Cardiology 2. Neurology |
Medicare and VA databases |
Medicare (https://www.medicare.gov/) is a US federal health insurance scheme that subsidises healthcare services for US citizens aged 65 years or over. VA databases was explained previously (see row 17) |
1. Health insurance claims data 2. EHRs and EMRs data |
| 37 | Franklin et al. [58] | Cardiology | 3 US health care claims data sources: Optum Clinformatics, IBM MarketScan and Medicare | Optum Clinformatics and IBM MarketScan are two commercial US claims database [58]. | Health insurance claims data |
| 38 | Fu et al. [59] | Nephrology | The Swedish Renal Registry | The Swedish Renal Registry is a nationwide registry of patients with stages 3–5 CKD who have attended nephrologist-specialist care in Sweden between 2007–2017 [59]. | National registry data |
Abbreviations: CALIBER ClinicAI research using Linked Bespoke studies and Electronic health Records, CPRD Clinical Practice Research Datalink, HES Hospital Episode Statistics, ONS Office for National Statistics, EHRs electronic health records, EMRs electronic medical Records, SEER Surveillance, Epidemiology and End Results program, US United States, HPFS Health Professionals Follow-up Study, THIN The Health Improvement Network, UK United Kingdom, USRDS United States Renal Data System, CKD chronic kidney disease, ESRD end-stage renal disease, COHERE the Collaboration of Observational HIV Epidemiological Research in Europe, HIV Human immunodeficiency virus, NCRAS National Cancer Registration and Analysis Service, VACS the Veterans Aging Cohort Study, STOP-COVID The Study of the Treatment and Outcomes in Critically Ill Patients with COVID-19, COVID-19 coronavirus disease, ICUs intensive care units, NCDB National Cancer Database, PDR Prescribed Drug Register, NPR National Patient Register, VA Department of Veterans Affairs, HIV-CAUSAL HIV Cohorts Analyzed Using Structural Approaches to Longitudinal data, REIN the French Renal Epidemiology and Information Network, RRT renal replacement therapies, BADBIR British Association of Dermatologists Biologic and Immunomodulators Register, ROI Republic of Ireland, SRTR Scientific Registry of Transplant Recipients, OPTN Organ Procurement and Transplant Network, NA-ACCORD the North American AIDS Cohort Collaboration on Research and Design, BladderBaSe the Bladder Cancer Data Base Sweden, SNRUBC The Swedish National Register of Urinary Bladder Cancer, NDB the National Database of Health Insurance Claims and Specific Health Check-ups of Japan, GHS Geisinger Health System, SHCS Swiss HIV Cohort Study, CER2 The Comparative Effectiveness Research through Collaborative Electronic Reporting Consortium