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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 - PowerPoint PPT Presentation
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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
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 IgEharmonised definitions of
eczema, airway allergy, wheeze, asthma
blood sampled at age
PIAMA
n=
PREVASC
n=
KOALA
n=
total
n=
1 y 370 230 700 1.300
2 y - 360 700 1.060
6-8 y 750 220 600 1.470
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-validation1.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 cohortsPriority 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