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NeuroGEN

Neurological & Mental Health Global Epidemiology Network

NeuroGEN USAScotlandUKNetherlandsFinlandKoreaTaiwanHong KongAustralia Medicare (20% sample)MedicareMedicaidMedicaidPublic Health Scotland (ISD)ISDClinical Practice Research Datalink (CPRD)CPRDThe Health Improvement Network (THIN)THINUK Biobank (UKB)UKBPHARMO Database NetworkPHARMOFinnish healthcare registers (FinReg)FinRegNational Health Insurance Service – National Health Information Database (NHIS-NHID)NHIS-NHIDNational Health Insurance Research Database (NHIRD)NHIRDChang Gung Research Database (CGRD)CGRDTaiwan Biobank (TWB)TWBClinical Data Analysis and Reporting System (CDARS)CDARSPharmaceutical Benefits Scheme; 10% sample (PBS)PBSVictorian Linked Health Data (VLHD)VLHD the network, drawn as a graph

so…

15 = 7 claims
+ 6 EHR
+ 2 biobank

≈ 320 million people

9 regions · 4 continents

View the 15 databases as a table
RegionDatabaseType
United States Medicare (20% sample) claims
United States Medicaid claims
Scotland Public Health Scotland (ISD) EHR
United Kingdom Clinical Practice Research Datalink (CPRD) EHR
United Kingdom The Health Improvement Network (THIN) EHR
United Kingdom UK Biobank (UKB) biobank
Netherlands PHARMO Database Network EHR
Finland Finnish healthcare registers (FinReg) claims
South Korea National Health Insurance Service – National Health Information Database (NHIS-NHID) claims
Taiwan National Health Insurance Research Database (NHIRD) claims
Taiwan Chang Gung Research Database (CGRD) EHR
Taiwan Taiwan Biobank (TWB) biobank
Hong Kong Clinical Data Analysis and Reporting System (CDARS) EHR
Australia Pharmaceutical Benefits Scheme; 10% sample (PBS) claims
Australia Victorian Linked Health Data (VLHD) claims

Source: Tsai DHT et al. Cross-Regional Data Initiative for the Assessment and Development of Treatment for Neurological and Mental Disorders. Clin Epidemiol 2023. PMID 38146486.

Off the board

The proof is the easy part. What it means for patients is the point.

  1. 1

    The burden is enormous

    Cognitive disorders, including dementia, and stroke are leading causes of disability, and mental health disorders, including depression, account for up to a third of all years lived with disability.

    PMID 32572794

  2. 2

    Trials leave the hardest questions open

    Randomised trials often do not give enough information on a medicine's benefits and risks for vulnerable groups. Pooling databases across countries gives the power to study rare outcomes and small groups, earlier safety answers after a medicine is approved, and results that hold beyond one health system.

    PMID 32572794

  3. 3

    Sometimes the answer overturns the question

    Earlier studies had linked diabetes in pregnancy to ADHD in children. One NeuroGEN study tested that link with sibling comparisons, and for gestational diabetes it did not hold. The case is worked below.

case file · PMID 38589601

The case of the missing cause

diabetes in pregnancy → ADHD ?

everyone: HR 1.10 (1.04–1.17)

siblings, one exposed, one not:

HR 1.05 (0.94–1.17)

∴ the interval crosses 1 …

unlikely to be causal

(diabetes that began before pregnancy: HR 1.39 (1.25–1.55), still raised)

everyone siblings 1.10 1.05 0.91.01.11.2 no effect

Hazard ratios for ADHD after gestational diabetes, 95% confidence intervals, log scale. Source: Chan AYL et al. Nature Medicine 2024, PMID 38589601. The verdict is about gestational diabetes only.

Sometimes the most useful thing the data can tell a mother is what was never her fault.