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Building centres of expertise according to the Dutch model?

  • Fons JM Gabreëls
  • Jolanda S Huizer
Open Access
Oral presentation
  • 1.2k Downloads

Keywords

Rare Disease Treatment Centre Quality Monitoring Steering Committee Professional Group 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

Establishing the expertise for rare diseases started in the Netherlands by an inventory on existing expertise in 500 rare diseases at the Dutch Medical University Centres. The outcome of this survey was a vast list of persons with special knowledge of one or several of these rare diseases. The Dutch Steering Committee on Rare Diseases and Orphan Drugs concluded that differentiation within this list was needed by defining more specialised criteria for expertise. The criteria are based on European directives and are in line with a future perspective to improve quality of care. The highest distinguished level of expertise is an Expertise Centre where basic research, scientific output and professional training result in multidisciplinary high level care for people with complex rare diseases. Alongside this, Expertise Teams provide applied clinical research and high level care in local treatment centres. Currently, the Steering Committee is consulting professional groups, treatment centres and other stakeholders to gain support for this plan.

In 2011, the Steering Committee will advise the Ministry of Health about the organisation and the quality monitoring of the Centres of Expertise and Teams for various rare diseases. This advice will also contain a paragraph on a financing model concerning the organisation of care for rare diseases in the Netherlands.

Copyright information

© Gabreëls and Huizer; licensee BioMed Central Ltd. 2010

This article is published under license to BioMed Central Ltd.

Authors and Affiliations

  1. 1.Dutch Steering Committee Orphan DrugsThe HagueThe Netherlands

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