EPIRARE_Results_Domenica Taruscio.pdf - Treat-NMD

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Treat NMD strengths • Higher involvement of patients, families and patients organisations at all levels • Higher level of «ethical scrutiny» especially regarding informed consent and patient participation in registries governing boards • Higher level of data exchange with other registries 6th TREAT-NMD Curators’ & 5th TGDOC Meeting Saturday and Sunday, 29th-30th September 2012, Istanbul, Turkey
Areas of possible improvement • Quality control seems to be slightly weaker as compared with other EPIRARE registries (especially institutional epidemiological registries) • Not all registries seem to have adopted the same coding system • The only stable funding source is “Patient’s associations”, underlining the need of reflection on financial sustainability 6th TREAT-NMD Curators’ & 5th TGDOC Meeting Saturday and Sunday, 29th-30th September 2012, Istanbul, Turkey
Page 1 and 2: Neuromuscular patient registries in
Page 3 and 4: Building Consensus and Synergies Eu
Page 5 and 6: Overview on the current situation,
Page 7 and 8: Methods • Questionnaire developed
Page 9 and 10: Treat NMD registries: General chara
Page 11 and 12: Dimension and volume of activity 6t
Page 13 and 14: Aims of the registry 6th TREAT-NMD
Page 15 and 16: What kind of data are collected? 6t
Page 17 and 18: Data providers 6th TREAT-NMD Curato
Page 19 and 20: What kind of disease coding systems
Page 21 and 22: Quality dimensions ALL re g istrie
Page 23 and 24: Kind of data collected: anonymous,
Page 25 and 26: Approval by an ethics committee (RE
Page 27 and 28: Governance Answe r Op tio ns Main g
Page 29 and 30: Data access and exchange 6th TREAT-
Page 31 and 32: Initial and current funding Treat N
Page 33: Treat NMD peculiarities • More fo
Page 37 and 38: Plans for the future (RD connect)

EPIRARE_Results_Domenica Taruscio.pdf - Treat-NMD

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