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

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 Collaboration

biobanking: total and specific IgE harmonised definitions of eczema, airway allergy, wheeze, asthma blood sampled at age PIAMA n= PREVASC n= KOALA n= total n= 1 y y y Gene-environment interactions (ALLERGENIC)

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 1.parent reported: doctor’s diagnosis and medication 2.SFK: medication prescriptions 3.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) 1.parent reported: doctor’s diagnosis and medication 2.SFK: medication prescriptions 3.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) 1.parent reported: doctor’s diagnosis and medication 2.SFK: medication prescriptions 3.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