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Ségolène Aymé Task Force on Rare Diseases European Commission DG Public Health

Centres of Expertise for Rare Diseases and European Reference Networks Recommendations from the RDTF and the High Level Group on Health Services and Medical Care. Ségolène Aymé Task Force on Rare Diseases European Commission DG Public Health. Rare Diseases Task Force (RDTF).

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Ségolène Aymé Task Force on Rare Diseases European Commission DG Public Health

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  1. Centres of Expertise for Rare Diseases and European Reference NetworksRecommendations from the RDTF and the High Level Group on Health Services and Medical Care Ségolène Aymé Task Force on Rare Diseases European Commission DG Public Health ENCE Kick off Meeting - Frankfurt - 28 April 2009

  2. Rare Diseases Task Force (RDTF) • Established in 2004 • Sept 2005: Issue of a first report on CR in Europe • Ad hoc expert group • 2 workshops (June and September 05) Dec 2005: RDTF meeting: Update the 2005 report March 2006: report to HLG on plans Sept 2006: Workshop of the expert group Dec 2006: Publication of the second report March 2008: Workshop of the expert group July 2008: Publication of the third report ENCE Kick off Meeting - Frankfurt - 28 April 2009

  3. I- Centres of Expertise / Reference ENCE Kick off Meeting - Frankfurt - 28 April 2009

  4. Expert Centres have always existed in practice… • Hierarchy of knowledgeable experts • Teachers / Authors of articles • Leaders of opinion • Technical platforms • Rich institutions with developped services • Research institution with innovative services BUT The information was restricted to a few professionals No objective criteria ENCE Kick off Meeting - Frankfurt - 28 April 2009

  5. Reasons to move to a more formal approach….. • Budget constraint in teaching hospitals • Annual budget to serve the area population • Strict budget for research activities • Analytical budget • Regulation of clinical research • More administrative constraints • Higher costs • Accessibility of the information through Internet • Second opinion requests by phone, fax, e-mail • Mobility of patients / free choice ENCE Kick off Meeting - Frankfurt - 28 April 2009

  6. Expert Centres for RD seem to be needed…. • Patients are rare but experts are rare too…. • Need to identify them • Expertise may be found only at International level • Impossible for most countries to offer appropriate services to all patients • Clinical research is badly needed • Requires cohorts large enough • Systematic collection of data • Production of clinical recommendations ENCE Kick off Meeting - Frankfurt - 28 April 2009

  7. But patients should not have to travel…. • Financial constraints • Cost of travel + accomodation • Communication constraints • 23 languages in Europe + cultural differences • Logistical contraints • Expert departments have a limited number of beds and of clinics ENCE Kick off Meeting - Frankfurt - 28 April 2009

  8. Centres of Reference • Official CR for Rare Diseases: • Denmark, France, Italy, Sweden • In preparation: Spain…. • Official networks of CR: • France, Germany, Spain • Official CR but not for Rare Diseases specifically: • Austria, Belgium, Finland, Greece, Ireland, Netherlands, Spain, UK • Non official CR / established by reputation: all countries ENCE Kick off Meeting - Frankfurt - 28 April 2009

  9. Statements consensus reached • European added value of expert centres • Need for disseminating the information • Definition of what is an expert centre • High level of expertise / high volume of activity / capacity to provide expert advice / multidisciplinary approach / links with other centres and patient organisations • Priority for networks of centres • Rejection of hierarchy between European centres and national/regional centres

  10. The definition of what is a CE/CR differs from one country to another… • Definition of rare disease differs • Size of the population to serve differs • Definition of the task differs • Number of diseases to be covered differs • Process to identify CR differs • Financial support differs • Purpose for establishing CR differs ENCE Kick off Meeting - Frankfurt - 28 April 2009

  11. Topics with disagreement (1) • Balance benefice / malefice • Positive • Improving access for EU citizens • Maximising cost /effectiveness • Helping to share knowledge / training • Negative • Distant referral / long waiting list • Psychological burden: language + isolation • Loss of trust in local services • Loss of interest by other professionals

  12. Topics with disagreement (2) • Scope of activity • Disease centred • By disease • By medical specialty • Technology centred • Surgery / investigation / highly specialised treatment • Social support centred • Polyhandicap / familial dimension /

  13. Topics with disagreement (3) • Geographical reach of centres • European centres • National centres • Regional centres VS • Level of designation / funding • EU • Member states • Regions

  14. Topics with disagreement (4) • Centres of reference • National centres • Regional centres • where patients may be referred VS • Centres of excellence / of expertise • Characterised by communication • Production of guidelines • Shared expertise for patients

  15. Topics with disagreement (5) • From the concepts to the reality • Diffusion of the concepts • Publication of experiences • Follow-up of national initiatives • Definition of responsibilities • European networks: • European Commission • Centres at national or regional level • bilateral contracts between countries

  16. Conclusion • Read the RDTF reports www.rdtf.org • Read the French National Plan for Rare Diseases and the document estblishing the policy around « centres of reference » www.orpha.net ENCE Kick off Meeting - Frankfurt - 28 April 2009

  17. Conclusions from the third report on Centres of expertise • MS having a policy agree as much as possible on an operational definition of what is a CE and on how to designate them • MS with established CE share their experience and their outcome measures • MS without CE either establish CE or contract with Existing CE • MS identifies their CE and provide them with necessary funding • EC promote the identification of CE and diffuse the information ENCE Kick off Meeting - Frankfurt - 28 April 2009

  18. II- European Reference Networks ENCE Kick off Meeting - Frankfurt - 28 April 2009

  19. ERN definition and scope • « Physical or virtual networking of knowledge and expertise » • Types of networks • Research networks • Share data through systematic collection • Establish repositories of biological samples • Share expertise for research puroposes • Public Health networks • Share clinical experience to sort out difficult cases • Produce guidelines based on shared clinical experience • Produce information for all stakeholders ENCE Kick off Meeting - Frankfurt - 28 April 2009

  20. Conclusions from the third report on European Reference Networks Questions: • How can the ERN of highest quality be selected ? • How are selected members of ERN ? • How to avoid limiting new initiatives ? • How to ensure long-term funding and competition ? • Question of liability of virtual clinics ENCE Kick off Meeting - Frankfurt - 28 April 2009

  21. Conclusions from the third report on European Reference Networks Recommendations: • Provide funding to pilot projects until their evaluation • Establish methods to assess the added-value of ERN • Encourage electronic tools • Encourage production of guidelines to protect patients ENCE Kick off Meeting - Frankfurt - 28 April 2009

  22. Dissemination of Information on expert clinics and European networks Orphanet services in 5 languages: English, French, German, Italian, Spanish ENCE Kick off Meeting - Frankfurt - 28 April 2009

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  26. Conclusion • Read the RDTF reports www.rdtf.org • Read the French National Plan for Rare Diseases and the document establishing the policy around « centres of reference » www.orpha.net ENCE Kick off Meeting - Frankfurt - 28 April 2009

  27. Keep updated: OrphaNews Europe • Online newsletter of the Rare Diseases Task Force • Over 8,000 registered • Readers • Political News • Scientific News • Events • Publications • Register on Orphanet website ENCE Kick off Meeting - Frankfurt - 28 April 2009

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