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Childrens Cohort Activity in Wales

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Forms of longitudinal studies used in medicine and social science. Share a common characteristic or experience within ... Millenium Cohort Study 19,000 (2000) ... – PowerPoint PPT presentation

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Title: Childrens Cohort Activity in Wales


1
Childrens Cohort Activity in Wales
  • Gareth Morgan
  • Academic Lead, Childrens Network

2
What are Cohorts?
  • Forms of longitudinal studies used in medicine
    and social science
  • Share a common characteristic or experience
    within a defined time period
  • (e.g., are born, leave school, lose a job,
    exposed to a drug or a vaccine, etc.)
  • Prospective or retrospective
  • Examples
  • Millenium Cohort Study 19,000 (2000)
  • Avon Longitudinal Study of Parents and Children
    ALSPAC -14,000 (1991-2)

3
Why Cohorts?
  • May provide evidence to refute or confirm the
    existence of a suspected association between
    cause and disease
  • E.g. Severe malnutrition

4
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5
Cohort for Severe Malnutrition?
  • Children with severe malnutrition die from
    infections
  • Some studies show reduced immunity
  • However, immunodeficiency causes malnutrition
    e.g. HIV, genetic variants
  • So which comes first?
  • Characterise immune system at birth
  • Follow and study through childhood

6
PROBAT 1
  • Probiotics to prevent eczema and asthma
  • Placebo controlled trial
  • WAG and industry (Cultech) funded
  • Registered with Lancet Trials database
  • Intervention at 36w gestation and 1st
  • 6 months of life

7
PROBAT 2
  • 350 mother infant pairs
  • Immunity assessed in blood at 36w, birth and 6
    months
  • Studies of breast milk and intestinal flora
  • Assessment for atopy including allergic disease
    at 6 months, 2 years and 7 years.

8
A Welsh Birth Cohort?
  • All Wales discussions since 2002 Glamorgan,
    Cardiff, Swansea, Bangor, and others
  • Funding problematic
  • Concept of an E-cohort conceived
  • Childrens network members
  • Health Informatics Research Unit (HIRU)

9
HIRU
  • Funded by Wales Office of Research and
    Development
  • Part of the strategic infrastructure for research
    in Wales with interface with new CRC networks
  • Built upon developments in information analysis
    at Swansea RCP iLab, clinical systems
    development, public health and GIS analyses
  • Working in partnership with multiple NHS and non
    NHS bodies
  • Large scale computing and support from IBM as
    part of 50 Institute of Life Science development
    at Swansea Medical School

10
Wales (and UK) Health Information
  • Lots collected, little used, opportunities
  • Most analyses based on mortality or inpatient
    data now linked, or from primary care data
  • Majority of datasets are anonymised and stand
    alone
  • Increasing number and breadth of clinical
    datasets
  • Data relevant to health held by non-health
    organisations

11
HIRU Research
  • Develop methodologies for accessing and combining
    routine data in ways which do not breech data
    confidentiality rules and regulations, but which
    still permit the use of data for a wide range of
    research purposes.
  • Explore how to use routinely collected and other
    data to support large scale multi-site
    intervention and cohort studies and policy
    relevant research.
  • Develop innovative analyses of large and combined
    datasets (narrative data analysis)

12
Datasets
  • Individual level - health
  • Population (NHSAR)
  • Inpatients -PEDW (HES)
  • Births
  • Deaths
  • Outpatients
  • AE
  • GP Data
  • Laboratory systems
  • Out of Hours Services
  • Child Health Database Wales
  • NHS Direct Wales
  • Radiology- Imaging
  • Individual level non health
  • Social Services
  • Educational Attainment
  • Clinically rich databases
  • Cancer
  • Screening (multiple conditions)
  • Congenital Anomalies
  • Myocardial Infarction
  • Diabetes
  • Stroke
  • Arthropathies
  • Ecological datasets
  • Census- small areas
  • Ordnance Survey - Mastermap
  • Transport
  • Environmental Health
  • Leisure
  • Government departments and agencies

13
Longitudinal studies group
  • Childrens network initiative Jennifer Shepherd
  • WORD/MRC applications 4 in current round,
    (Environments for Healthy Living Cohort
    Swansea/Cardiff/ London/Melbourne, allergy,
    diabetes)
  • (Wellcome - Electronic Patient Records and
    Databases in Research)
  • ESRC/UKCRC - DECIPHer
  • Big Lottery

14
Summary
  • Cohorts are powerful tools for research
  • Linking specific research studies to cohorts
    enhances their value
  • Current IT initiatives dramatically increases the
    potential
  • WORD networks can collaborate to lead this field
    nationally and internationally

15
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16
Anonymisation
Construct ALF
Validate
HIRU (Blue C)
Health Solutions Wales
Data Provider
Anonymisation process
Recombine
Encrypt and load
Operational system
HIRU (Blue C)
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