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Progetti e attività Internazionali

EU Tender on EU Newborn Screening Practices



As a result of a tender launched by the European Commission, an activity has started with the aims of identifying and evaluating all aspects deemed relevant to the implementation of a public health action in newborn screening (NBS), taking into consideration the views of professionals, patients and health authorities.
Newborn screening practices and policies will be mapped in the whole European Union and analysed on the basis of current expert methodologies and stakeholders’ views. Within the perspective that NBS is implemented as a public health initiative, a range of aspects will be considered, which ensure the feasibility and sustainability of the screening program and its efficacy in improving population health, as well as patient care and quality of life.
Moreover, challenges and opportunities resulting from NBS implementation will be identified and solutions proposed, accompanied with the information necessary to let national authorities to make their own free but informed choices. Finally, the feasibility of supporting actions at the Community level will be explored in order to identify the strategies which the European Commission can adopt to promote the establishment and improvement of NBS programmes in the EU.


Outcomes (see below the document “Technical specifications” for a detailed description)

The expected deliverables (see below the final documents produced) are:

  • Report on the practices of NBS for rare disorders
  • Expert opinion, including a decision-making matrix, on the development of European policies in the field of newborn screening for rare diseases
  • A European Union Network of Experts on Newborn Screening (EUNENBS) (Experts interested in joining EUNENBS can see below the documents “Criteria for the inclusion of experts” and “Application form”)
  • A European Experts Consensus Workshop on Newborn Screening



Partners

National Centre for Rare Diseases, National Institute for Health, Rome, Italy
Pediatric Hospital, University Hospital, Heidelberg, Germany
VU University Medical Centre, Amsterdam, The Netherlands
National Institute for Public Health and the Environment, Bilthoven, The Netherlands


Acknowledgements

This work is being funded by the European Commission DG SANCO (Contract number 2009 62 06)


Questionnaire on Newborn Screening Practices in the EU

Access to the questionnaire is reserved to selected experts identified by the partners.


Reserved area

Access to the reserved area is restricted to the project partners and to participants in the project meetings


Allegati

Pubblicato il 28-10-2014 in Progetti e attività Internazionali , aggiornato al 03-11-2014

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