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Generation R Study Claudia Kruithof, MSc datamanager Generation R EUCCONET workshop june 2011 – Record Linkage.

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Presentation on theme: "Generation R Study Claudia Kruithof, MSc datamanager Generation R EUCCONET workshop june 2011 – Record Linkage."— Presentation transcript:

1 Generation R Study Claudia Kruithof, MSc datamanager Generation R EUCCONET workshop june 2011 – Record Linkage

2 Outline The Generation R Study Record linkage: the Netherlands Record linkage: Generation R Record linkage: future plans

3 The Generation R Study Population-based prospective cohort study From early fetal life until young adulthood Enrolment from 2001 to 2006 Urban, multi-ethnic population Almost 10,000 parents and children All inhabitants of Rotterdam, the Netherlands during delivery of the children; response rate of 61%

4 The Generation R Study Main hypothesis Critical periods in fetal and early postnatal life are important for health and disease in childhood and adulthood Primary areas of research Growth and physical development Behavioural and cognitive development Diseases in childhood Health and healthcare

5 The Generation R Study General aims To describe normal and abnormal growth, development and health from fetal life until young adulthood To identify biological, environmental and social determinants of normal and abnormal growth, development and health from fetal life until young adulthood To develop and evaluate strategies for prevention and early identification of groups at risk

6 The Generation R Study Phase I: During pregnancy and delivery Mother and partner (12, 20, 30 weeks of gestation) Physical examinations (weight, heigth, blood pressure) Questionnaires (health, diet, emotions, living conditions) Fetal ultrasound examinations (growth, fetal organ development) Blood and urine samples Birth Information from midwives and obstetricians (pregnancy, delivery) Cord blood samples Home visit at 12 weeks Consent after birth Neuromotoric examinations

7 The Generation R Study Phase II: Birth to 4 years Routine child health centers (11 visits, children) Growth, development, screening, vaccination Questionnaires (once a year, parents) Diet, diseases, behaviour, cognition, healthcare use Focus cohort (6 weeks, 6, 14, 24, 36 and 48 months, children) Ultrasound examinations, growth in detail, biological material

8 The Generation R Study Phase III: 5 to 16 years Overall structure 3-yearly visits to research center: extensive measurements Yearly questionnaires Currently Focus @ 5 visits at research center are ongoing Focus@9 planned ~ January 2012

9 Record Linkage: The Netherlands National database for pregnancy and the neonatal period - restricted access General practitioner, pharmacies, hospitals -no national identifier for medical information -national database medication use, anonymous Municipal health services - electronic registration with use of national identifier started a few years age, Kidos ® National address administration (GBA) - national identifier

10 Record Linkage: Generation R Obstetric records in hospitals and mid-wife practices Routine child health centres (CB) Municipal health service (GGD) National address administration (GBA)

11 Record Linkage: Healthcare Midwives Registration mid-wife practices Micronatal ® : registration midwives practices Linkage: date of birth, personal information and expected date of birth Limitations: - not all practices make use of electronic registration - errors in personal information, date of birth

12 Record Linkage: Medical Information Pregnancy Obstetric records in hospitals and midwife practices Standardized forms filled in by midwives Completed with a search in the hospitals and mid-wife practices; date of birth, personal information Information on pregnancy complications and outcomes, health of mother and child and hospitalization after birth

13 Record Linkage: Child Health Centre Routine child health centres Standardized forms Forms labeled Linkage Generation R identifier Child Health Centre identifier Date of birth, gender, personal information

14 Record Linkage: Municipal Health Service Municipal health service (GGD) Linkage at health service: date of birth, gender and personal information Generation R children identified Identifier health service stored at Generation R Primary schools Questionnaires Study about bullying at primary schools Identifier municipal health service used for linkage

15 Record Linkage: National Address Administration National Address Administration (GBA) Linkage to the adminstration of Rotterdam performed by the Centre for Research and Statistics Linkage: date of birth, gender, first known address, personal information Complete address history starting a year before pregnancy Environmental measurements to calculate individual exposure performed by TNO

16 Record Linkage: National Address Administration National Address Administration (GBA) Linkage performed by administration of Rotterdam Linkage: date of birth, gender, postal code, personal information Current address in the region of Rotterdam Access to the national address administration Search on (maiden) name and date of birth Complete address history within the Netherlands, emigration

17 Record Linkage: future plans Pharmacies Information currently retrieved from pharmacies trough written consent forms Future plan to link to the national database Not all pharmacies participate Data anonymously stored Linkage needs to be performed during import when personal information is available

18 Record Linkage: future plans National database for pregnancy and the neonatal period Information on all pregnancies in the Netherlands stored Restricted access Linkage performed by authorised persons Linkage: combination of data of birth mother, date of birth children

19 The Generation R Study Group

20 Thank you Any questions?


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