Childrens Cohort Activity in Wales

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Childrens Cohort Activity in Wales

• Gareth Morgan
• Academic Lead, Childrens Network

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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)

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Why Cohorts?

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

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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

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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

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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.

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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)

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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

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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

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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)

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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

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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

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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

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