Public health indicators for rares diseases

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Public health indicators for rares diseases
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Public health indicators for what purposes ?

• Public health policies aim at improving the
  health of citizens.
• Different ways to improve the health of citizen
  in general
• Primary prevention
• Secondary prevention
• Care
• To be effective, health policies must be based on
  factual information
• Public health indicators A common EU issue

3
Public health indicators in ECHI (EU Health
indicators)1997-2004

• Demographic and socio economic situation
• Health status
• Determinant of health
• Health systems

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Public health indicators in rare diseases
Specific goals

• Primary prevention ?
• Secondary prevention
• Care

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Public health indicators in rare diseases
Specificities

• Numerous diseases covering all medical
  specialities Priorisation ?
• Usually an hidden part of health system
  codification poorly recognised the rare diseases
• Care rarely evidence based
• R D warranted / very costly if succesful
• Evaluation of care
• Availibility of care

Key issues
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Priorisation of rare diseases for public health
surveillance

• Producing reliable indicators is quite costly
• What diseases / group of diseases should be
  monitored ?
• Need to have tools criteria of priorisation
• Need to document each diseases
• Need to rank the rare diseases for public health
  surveillance

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Public health indicators in rare diseases some
proposals

• Demographic and socio economic situation
• Health status
• Mortality
• Morbidity, disease specific
• Composite health status
• Determinant of health
• Collective action role of association
• Health systems
• Prevention, health protection, health promotion
• Health care ressources
• Diagnosis clinical expertise / reference
  networks or centers
• Care
• Health care utilisation
• Health expenditures and financing
• Health quality /performance
• Support to clinical research

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Agenda

• Call for a meeting / January 30 th, Paris
• Rare diseases experts
• Death certification experts