Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop on registries"

Summary of outcomes from 2009 EPPOSI Registries Workshop and the 2009 RDTF Report Tsveta Schyns Founder and Secretary General of ENRAH

RARE Diseases Characteristics ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Rare Diseases Task Force Workshop 13 March 2008, Paris, 2009 Report. I ,[object Object],[object Object],[object Object],[object Object]

[object Object],[object Object],[object Object],[object Object],Rare Diseases Task Force Workshop 13 March 2008, Paris, Report. II

Purposes of PR in the field of RD RDTF Workshop 2008. III ,[object Object],[object Object],[object Object],[object Object],[object Object]

1 st EPPOSI Workshop on Patient Registries for Rare Disorders 18-19 March 2009 Brussels Belgium ,[object Object],[object Object],[object Object]

Programme First EPPOSI Workshop ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Planning and Operating Patient Registries ,[object Object],[object Object],[object Object],[object Object],[object Object]

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2. Protocol and CRF design ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

2. Protocol and CRF design Related Issues to be brought up ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

3. Implement and Roll Out ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

3. Implement and Roll Out Related Issues to be brought up ,[object Object],[object Object],[object Object],[object Object],[object Object]

4. Daily Operations ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

4. Daily Operations Related Issues to be brought up ,[object Object],[object Object],[object Object],[object Object]

5. Output from Patient Registries ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

4. Output from Patient Registries Related Issues to be brought up.I ,[object Object],[object Object],[object Object],[object Object],[object Object]

4. Output from Patient Registries Related Issues to be brought up.II ,[object Object],[object Object],[object Object],[object Object],[object Object]

Conclusions ,[object Object],[object Object],[object Object],[object Object],[object Object]

THANK YOU ! ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop on registries"

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Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop on registries"

Editor's Notes