Session 2 segolene_ayme

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 ,[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 Networks 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

Availability at national level in 2007 of the 22 first OMPs authorised at EU level before 1 January 2006 (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]

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

Session 2 segolene_ayme

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