EPIRARE_Results_Domenica Taruscio.pdf - Treat-NMD

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Domains investigated • Aims and scope of existing RD registries • Data sources and kind of data collected • Methodology and quality issues • Data protection and ethical issues • Governance, communication and data sharing • Financial sustainability • Needs, expectations, opinions on the platform 6th TREAT-NMD Curators’ & 5th TGDOC Meeting Saturday and Sunday, 29th-30th September 2012, Istanbul, Turkey
Methods • Questionnaire developed between June and October 2011; • Available questionnaires on RD registries consulted; • Draft discussed during the first EPIRARE meeting (Rome, July 12 and 13, 2011); • Questionnaire available online and tested by 10 registrars on October 2011; • Invitations to participate in the survey sent out using different channels, including the registry directory in Orphanet and other networks like Treat NMD • Data collected from November 2011 to February 2012 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: Overview on the current situation,
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 and 36: Areas of possible improvement • Q
Page 37 and 38: Plans for the future (RD connect)

EPIRARE_Results_Domenica Taruscio.pdf - Treat-NMD

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