Division 2.1.4 Developing strategies and mechanisms for preventing, exchanging information on and responding to non-communicable disease threats, including gender-specific health threats and rare diseases (Article 3.2.d., Annex — point 2.3)

Indicators and data on non-communicable diseases have to be collected with long-term and sustainable collections in mind, taking into account the ECHI strategy and Eurostat standards. Proposals should set out suggestions and methods to sustain a routine register, a survey basis, or be based on future modules from the European Health Survey System or using a combination of sources.

• Priority areas to be addressed and/or given special attention are: Sustainable routine collection of information and data has to be established or improved for diseases for which a solid indicators base definition exists^f1; use of this information for evaluating Public Health Programmes ;

• Areas of disease information not yet covered^f2;

• Information and the definition of indicators on neurodegenerative, neurodevelopment and non-psychiatric brain diseases relating to prevalence, treatments, risk factors, risk reduction strategies, cost of illness and social support^f3;

• Information and the definition of indicators on health effects of endocrine disruption;

• Information and definition of indicators to improve relevant information for specific aspects of women’s gynaecological and menopausal health (e.g. endometriosis);

• Support for reports and consensus building on the above points;

• Proposals contributing to the EU-strategy on Mental Health, as developed following the Commission's Green paper on Mental Health^{f4 f5}:

  1. (a)

     More data on the various determinants of mental health in the EU population and international harmonisation of mental health indicators;

  2. (b)

     More information (health/social/economic status) about vulnerable groups at risk of developing mental ill-health and/or of committing suicide in the EU (examples: unemployed, migrants and refugees, sexual and other minorities). The information provided should take the form of data generation.

• Priority being given, for rare diseases, to generalist networks for improving information, monitoring and surveillance. Priority actions will be:

  1. (a)

     Reinforcement of the exchange of information using already existing European information networks on rare diseases and promotion of better classification and definition;

  2. (b)

     Development of strategies and mechanisms for exchange of information among people affected by a rare disease, or volunteers and professionals involved;

  3. (c)

     Definition of relevant health indicators and development of comparable epidemiological data at EU level;

  4. (d)

     Organisation of a Second European Conference on Rare Diseases in 2007 or 2008;

  5. (e)

     Develop European Networks of Centres of Reference for Rare Diseases;

  6. (f)

     Technical support for exchange of best practice and development of measures for patient groups.

• In the field of mortality, development and analysis of codification practices for causes of death where practices differ at national level or where an appropriate aggregation (e.g. smoking-related deaths) is a problem.