Cross-Regional Data Initiative for the Assessment and Development of Treatment for Neurological and Mental Disorders

Figures & data

Table 1 Database Characteristics

Database Abbreviation	Database Full Name	Country	Source Type
PBS	Pharmaceutical Benefits Scheme 10% Sample Dataset	Australia	National Claims Database
VLHD	Victorian Linked Health Data	Australia	Claims Database
CDARS	Clinical Data Analysis and Reporting System	Hong Kong	Multi-center EHR^†
NHIS-NHID	National Health Insurance Service-National Health Insurance Database	Republic of Korea	National Claims database
CGRD	Chang Gung Research Database	Taiwan	7-hospital EHR
NHIRD	Taiwan’s National Health Insurance Research Database	Taiwan	National Claims Database
TWB	Taiwan Biobank	Taiwan	Interview Survey Data
FinReg	Finnish National Healthcare Registers	Finland	National Healthcare Registers
PHARMO	PHARMO Data Network	The Netherlands	Multi-center EHR^#
ISD	Public Health Scotland	Scotland	National EHR
CPRD	Clinical Practice Research Datalink	United Kingdom	EHR^‡
THIN	The Health Improvement Network	United Kingdom	EHR
UKB	United Kingdom Biobank	United Kingdom	Interview Survey Data*
Medicaid	Medicaid & CHIP Research Data	United States	Claims Database^¥
Medicare	20% Sample of Medicare	United States	National Claims Database

Notes: ^†Public healthcare sector in Hong Kong includes all general out-patient clinics, specialist out-patient clinics, and hospitals managed by Hospital Authority. ^#A total of 50 geographically defined areas in the Netherlands which comprises pharmacy dispensing information (4.2 million active patients), with possible linkage to a nationwide hospitalization database, in-patient hospital pharmacy database (2.0 million patients), general practice database (2.5 million patients), clinical laboratory database (1.2 million patients), and nationwide cancer, pathology, and perinatal registries. ^‡There are 14.2 million active (alive, currently registered) patients in UK CPRD meeting quality criteria. *With linked EHR. ^¥Alabama, Alaska, Arkansas, California, Colorado, Connecticut, Florida, Georgia, Hawaii, Idaho, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Montana, Nebraska, New Hampshire, New Jersey, New Mexico, New York, North Carolina, North Dakota, Ohio, Oklahoma, Pennsylvania, South Carolina, South Dakota, Tennessee, Texas, Utah, Vermont, Virginia, Washington, West Virginia, Wisconsin, Wyoming.

Abbreviation: EHR, electronic health records.

Figure 1 NeuroGEN databases.

‡Abbreviations: PBS, Pharmaceutical Benefits Scheme 10% sample dataset; VLHD, Victorian Linked Health Data; FinReg, Finnish national healthcare registers; CDARS, Clinical Data Analysis and Reporting System; NHIS-NHID, National Health Insurance Service-National Health Insurance Database; ISD, Public Health Scotland; CGRD, Chang Gung Research Database; NHIRD, Taiwan’s National Health Insurance Research Database; TWB, Taiwan Biobank; PHARMO, PHARMO Data Network; CPRD, Clinical Practice Research Datalink; THIN, The Health Improvement Network; UKB, United Kingdom Biobank; Medicaid, Medicaid & CHIP Research data; Medicare, 20% sample of Medicare.

Table 2 Accessibility of Available Databases

Source Type	Claims Databases							Electronic Health Records						Others
Database	NHIRD	NHIS-NHID	PBS	Medicaid	Medicare	VLHD	FinReg	CDARS	CGRD	THIN	CPRD	ISD	PHARMO	TWB	UKB
Specific policy for using	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓
Validation study	✓	✓		✓	✓	✓	✓	✓	✓	✓	✓	✓^¥	✓
Average costs(USD)	15,000	600 per mo	350 per 3-mo^¶	35,000 per data yr	96,000 per data yr	20,000	Depending on cohort size	0	0	0	19,000*	20,000	NA	4,000	7,000
Period of obtaining access to the database	6 mo	5–6 mo	4 wk	6 mo	3–6 mo	1.5–2 yr	Unknown	Depending on cohort size	Depending on cohort size	-^$	1 day (with license)^§	3 mo	1 mo	6 mo	1–2 mo
Require IRB approval before application	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓
Waiting time for IRB approval	4–6 wk	2–3 wk	2 wk	3–6 wk^ʃ	3–6 wk^ʃ	2 mo	6–16 mo	2–3 wk	3 wk	2–3 mo	1 mo	1–2 mo^#	1 mo	4–6 wk	-
IRB application fee (USD)	170	0	0	Varies by IRB and request	Varies by IRB and request	100	1,000–3,000	0	0^‡	0	0	0	0	170	-

Notes: ^¥1% audit of all data (validation of diagnosis paper submitted for publication). ^¶$950 for initial supply, $350 per 3-month data update plus $460 for each project approval. *GP data only, for academia. ^$The full dataset is available within UCL School of Pharmacy. §Without a license: unknown. ^ʃMedicare/Medicaid requires additional approval from Centers for Medicare and Medicaid Services (CMS) Privacy Board, which takes 8–16 weeks. ^#Depends on urgency. ^‡If applied by the healthcare personnel from CGMH.

Abbreviations: NA, not applicable; mo, month(s); wk, week(s); yr, year(s).

Figure 2 Database features.

Figure 3 Assessment for common data model conversion.

Notes: Green indicates that the data were available from the database and could be converted into CDM without additional data. Yellow indicates that the data could be captured by additional data or use of a proxy. Red indicates that the data were not available in the database, and it therefore could not be converted to CDM.