Table 3 Types of observational data used and subject area

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