Sesion 2 segolene ayme eu krakow may 10

State of the Arts of Services in Europe: where are the problems ? 5the European Conference on Rare Diseases 2010 Krakow, Poland, 13 may 2010 [email_address] Paris, France

[object Object],[object Object],[object Object],[object Object],Services addressing rarity ,[object Object],[object Object],National policy and social forums Access to innovative therapies Support to patient groups ,[object Object],[object Object],[object Object],[object Object],Funding for network and registries Neonatal screening for additional diseases if relevant Specialised centres for disability due to RD ,[object Object],[object Object],[object Object],Neonatal screening for PKU and hypothyroidism Centres of expertise by disease / group of diseases ,[object Object],[object Object],Networks of laboratories by level / External quality assessment AVAILABILITY OF SERVICES AFFORDABILITY OF SERVICES

Designated centres of expertise: Positive effect documented in Denmark, France, Norway ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

European Reference Networks of Centres of Expertise Call for proposals from DG Public Health since 2007 Calls for proposals from DG Research since 2000

Current Pilot European Reference Networks of Centres of Expertise ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Outcome so far…. ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Diagnostic tests are part of quality healthcare ,[object Object],[object Object],[object Object]

Major progresses in gene identification translated into diagnostic tests Number of genes tested by country Number of diseases tested by country

Genes tested in the greatest number of laboratories ,[object Object],[object Object],[object Object],[object Object]

Quality Assurance of genetic services ,[object Object],CPA standards 24 CCKL guidelines ISO 15189 ISO 17025 7 37 25 14 1 ,[object Object],[object Object],[object Object]

Availability of innovative treatments

Over 60 new drugs on the EU market since 2000 but major differences in availability and accessibility at country level (source: Eurordis Survey) 20-21 15-19 10-14 5-9 0-5

Information sources at country level ,[object Object],[object Object],[object Object],Country National information centres National helplines Bulgaria x x Denmark x x Finland x France x x Germany x Italy x x Norway x x Sweden x Spain x x UK x x

Supported by DG Sanco (Orphanet contract) Supported by DG Research (RDPlatform contract

A common portal / A diversity of sources

Challenges/Opportunities for Orphanet ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Sources of data for clinical research

395 Registries as strategic tools Number of patient registries per country ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Characteristics of Patient Registries

60 International Patient Registries around a medicinal product ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Emergence of concepts and initiatives Centres of expertise in Sweden 1990 OD office of French Ministry Eurordis Orphanet France EC communication Orphanet Europe OD regulation Danish RD Centres French Plan RDTF EUCERD Council Recommendation ECRD Copenhagen ECRD Paris ECRD Luxembourg ECRD Lisbon ECRD Cracow Danish information centre Bulgarian Plan Greek Plan Portugese Plan Spanish Strategy Italian RD decree Swedish information centre 2000 2002 2004 2006 2008 2010 Development of a community of stakeholders Establishment of infrastructures EU policy defined Member States’ policy

Policy to develop services in MS ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

CONCLUSION ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Report on initiatives and incentives 2009 www.eucerd.eu

Sesion 2 segolene ayme eu krakow may 10

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Sesion 2 segolene ayme eu krakow may 10