EPIRARE_Results_Domenica Taruscio.pdf - Treat-NMD

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Plans for the future (RD connect) • Increase confrontation and exchange with other registries and with biobanks • Create an online searchable catalogue of databases/registries • Report on common data elements and standardised coding systems • Report on global unique patient identifier • Report on sustainability options for databases/registries • Report of interoperability measures 6th TREAT-<strong>NMD</strong> Curators’ & 5th TGDOC Meeting Saturday and Sunday, 29th-30th September 2012, Istanbul, Turkey
Plans for the future (RD connect) • Prepare SOPs for collecting, storing and retrieving data • Prepare SOPs for “undiagnosed” RD cases and a regsitry for capturing clinical data on patients without a genetic diagnosis • Prepare training material and registry toolkit 6th TREAT-<strong>NMD</strong> 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 and 34: Treat NMD peculiarities • More fo
Page 35: Areas of possible improvement • Q

EPIRARE_Results_Domenica Taruscio.pdf - Treat-NMD

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