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

Generation R Study

Claudia Kruithof, MSc

datamanager Generation R

EUCCONET workshop june 2011 – Record Linkage

Outline

The Generation R Study

Record linkage: the Netherlands

Record linkage: Generation R

Record linkage: future plans

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%

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

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

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

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

The Generation R StudyPhase 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

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

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)

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

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

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

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

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

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

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

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

The Generation R Study Group

Thank you

Any questions?