Data curation in the MRC National Survey of Health

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Data curation in the MRC National Survey of
Health Development

• Michael Wadsworth

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MRC National Survey of Health Development 1946
Birth cohort

• Birth Registrations
• 3rd 9th March 1946 (n16 695)
• Population of the maternity survey
• (n 13 687)

Selection of follow-up sample of all single
births to married women with husbands in
non-manual and agricultural employment and 1 in 4
of all comparable births to women with husbands
in manual employment (n 5362)
Study of cohort first born offspring at ages 4
years and 8 years (n2205)
Study of womens health, annually, at ages 47-54
years (n1572)
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DATA COLLECTIONSMaternity study of all births
in 1 week in England, Wales and Scotland in
1946Follow-up of a class stratified sample
(n5362)In infancy at 2 4 yearsDuring the
school years at 6, 7, 8, 9, 10, 11, 13, 15
yearsIn early adulthood at 19, 20, 22, 23, 25,
26 yearsIn middle adulthood at 31, 36, 43, 53
years
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Response
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Seven areas in which change needs to be managed
in a long-term study

• Information collected on paper
• Machine readable data
• Metadata
• Classification and coding systems
• Biological samples and image information
• The study population
• Consent

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• Originals Problems
  Preservation/conservation method
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• Paper Brittle paper, Film
  Microfiche
• and fading pencil/ink
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• Machine readable
• information

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Originals Problems
Preservation/conservation methodMachine
readable Changing reading Transfer
of data to new information methods
and media holding media (e.g. cards
to tape to disc)Metadata
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Originals Problems
Preservation/conservation methodMetadata all
in Limited access and Menu driven
electronic index of paper/card form paper
medium problems data descriptions and
derivations
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Originals Problems
Preservation/conservation methodClassification
Systems change Recode using
original or derived datacoding systems in
if possible
electronically biology and the social
sciences
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Originals Problems
Preservation/conservation methodBiological
material, Decay, classification Freezing,
immortalisation, images
changes
digitisation of images
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Originals Problems
Preservation/conservation methodThe study
population Change of address Tracing
Waning interest
Web site/birthday card/broadcasts/
personal health feedback
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Originals Problems
Preservation/conservation methodConsent
implied by Fast changing consent Keep pace with
changing requirements.active participation requir
ements for But is retrospective consent
required? contact and for data use
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Core MRC team Other grant supported researchers
Collaborative projects5 scientists
3 scientists
Mental health 1 data curator and 6 PhD
students Cognitive
scienceassistant

Musculoskeletal health

Cardiovascular health
2 support staff

Reproductive health

Respiratory health


Genetics

Well-being

Ageing
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Science policy aim
Methods   To make more extensive
MRC data sharing policy use of existing data
resources Upgrading of metadata system   and
standardisation of metadata across
studies.       Data pooling, meta-analysis,
comparisons of effects as environment changes

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Development of risk to adult respiratory function

• Environmental/
• SES influences

Educational opportunity
Smoking
Infant nutrition
Infant pulmonary illness
Early life growth
Adult Respiratory function
Genetic influences
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Childhood adult risk adult poor respiratory
function