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Record linkage in Birth cohort Biobanks. Carel Thijs, Monique Mommers Maastricht University Biolink WP4 3 June, 2013. EU Birth cohorts. 77 birth cohorts in 21 EU countries. Collaboration. Opportunities meta-epidemiological studies: power & variation
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Record linkage in Birth cohort Biobanks Carel Thijs, Monique Mommers Maastricht University Biolink WP4 3 June, 2013
EU Birth cohorts 77 birth cohorts in 21 EU countries
Collaboration Opportunities • meta-epidemiological studies: power & variation • case-control studies within cohorts with biobanking • record linkage: enrichment and future follow-up • systems biology Biolink (BBMRI.nl) Challenges • maintenance of biobanks and cohorts • data management and quality control • harmonisation and interoperability • ethical, legal and societal implications (ELSI) • funding, governance, and publication policy
Gene-environment interactions (ALLERGENIC) biobanking: total and specific IgE harmonised definitions of eczema, airway allergy, wheeze, asthma
Aims for WP4 – birth cohorts To establish opportunities for • long-term follow-up (on health related outcomes) • keep follow-up rate high • substitute missing data (selective missings!) • harmonize methods and definitions • combine medical data from different source • establish validity of medical data • assess utility • guidelines and access
Case study WP4 – birth cohorts • validity and utility of medical data • case study ‘asthma’: harmonized definition in last 12 months: asthma complaints (ISAAC) OR inhalant medication use AND ever: doctor’s diagnosis of asthma OR inhalant medication prescription
Case study WP4 – birth cohorts Linkage with medication prescriptions (SFK) • validation of linkage (WP3) • WP4: validation of medical data WP4 cross-validation • parent reported: doctor’s diagnosis and medication • SFK: medication prescriptions • GP (and specialists): diagnosis and medication
Case study WP4 – birth cohorts Linkage with medication prescriptions (SFK) • validation of linkage (WP3) • cross-validation of medical data (WP4) • parent reported: doctor’s diagnosis and medication • SFK: medication prescriptions • GP (and specialists): diagnosis and medication
Case study WP4 – birth cohorts Linkage with medication prescriptions (SFK) • validation of linkage (WP3) • cross-validation of medical data (WP4) • parent reported: doctor’s diagnosis and medication • SFK: medication prescriptions • GP (and specialists): diagnosis and medication • utility: what do SFK data add? (WP4)
Case study WP4 – birth cohorts Priority list of medicines and medical data • related to asthma as outcome • asthma inhalation medication (also used for wheeze..) • antihistamine medication (airway allergy) • other drugs for airway allergy • topical corticosteroids (eczema) and other topicals • related to etiology, comorbidity • antibiotics • ADHD medication (common underlying exposures) in last 12 months: asthma complaints (ISAAC) OR inhalant medication use AND ever: doctor’s diagnosis of asthma OR inhalant medication prescription
Challenges Time & space issues; e.g. medication history • repeated parental questionnaires - cover calendar periods • biosample collection - time points • contacts with care - date of prescription vs start of use and continuation - different pharmacies • start of registrations - SFK gradually building up in time • national coverage and regions • linkage - delays (cohort data; registries)
Challenges Person issues; e.g. doctor’s diagnosis • identification of child – confusion sibs.. • repeated parental questionnaires – father or mother? • contacts with care - which doctor? GP, specialist, other.. - start of symptoms, time of diagnosis - end of disease episode? • linkage - delays in processing of cohort data, registration, data retrieval
Workplan WP4 – birth cohorts • June 2013 • identity check GBA (started) • data retrieval GPs (started for selected asthma cases) • preparation for pilot (pharmacies, IC; completed) • proposal submission SFK (in preparation) • Autumn 2013 • pilot (WP3) • adapted proposal for WP4 • asthma inhalation medication (also used for wheeze..) • antihistamine medication (airway allergy) • other drugs for airway allergy • topical corticosteroids (eczema) and other topicals • related to etiology, comorbidity • antibiotics • ADHD medication (common underlying exposures) in last 12 months: asthma complaints (ISAAC) OR inhalant medication use AND ever: doctor’s diagnosis of asthma OR inhalant medication prescription
Workplan WP4 – birth cohorts • 2014 • final linkage with SFK, check by WP3 • data retrieval from GPs and pharmacies when needed, e.g. for discordant medication histories or diagnoses • cross-validation and utility • reporting: concept white paper; article • Other birth cohorts • LucKi has obtained informed consent (limited region) • NTR birth cohort • PIAMA, PREVASC have no informed consent (WP5) in last 12 months: asthma complaints (ISAAC) OR inhalant medication use AND ever: doctor’s diagnosis of asthma OR inhalant medication prescription