3rd International-DSD Registry Steering Committee Meeting Friday 7th June 2013, 6.30pm 8pm – Humanities Lecture Theatre, University of Glasgow, Glasgow, UK Minutes Attending: Ian Ford (chair), Faisal Ahmed, Jillian Bryce, Feyza Darendeliler, Olaf Hiort, Jipu Jiang, Ellie Magritte, Berenice Mendonca, Martina Rodie, David Sandberg, Richard Sinnott, John Watt. Apologies: John Achermann, Hughes, Claudia Wiesemann ACTION Welcome The chair welcomed everyone to the 3rd Steering Committee Meeting. Approval of Minutes of 2nd SC Meeting The minutes of the 2nd Steering Committee were approved. Action Points Update All SOP revisions (including the revised patient information leaflets and consent have been completed and approved by the Local Ethics Committee (v.2.0 date: 091012) I-DSD Symposium is now underway. FA thanked FD for her idea of a new investigator’s workshop before the symposium which seemed to have been a success Networks and resources were identified for publicity for I-DSD symposium. An empty registry was created for anybody interested in looking at an empty version of the registry EuroDSD website is now closed. A parallel session for family support groups was held at the I-DSD symposium on Saturday am A Research Flowchart has been added to the website in text form at the moment and will be developed further in the new web template. JB Research Studies are being collected and the list of known active, planned or recently completed studies was circulated to the Committee. A public version of this list will be added to the website. JB Feedback monkey planned to assess usefulness of the Registry –Survey Steering Committee term of office. JB went through the planned terms in the current JB Charter which are fixed. FA raised the need to diversify the composition of the committee. A list of suggestions will be circulated to SC for approval. FA Current Tasks Ongoing Revisions. JJ gave a summary of recent changes to the I-DSD Registry Reduction of the mandatory fields to the Core Info Module. This will more users to enter brief details of cases.
3rd International-DSD Registry Steering Committee Meeting Friday 7th June 2013, 6.30pm – 8pm Humanities Lecture Theatre, University of Glasgow, Glasgow, UK Minutes Attending: Ian Ford (chair), Faisal Ahmed, Jillian Bryce, Feyza Darendeliler, Olaf Hiort, Jipu Jiang, Ellie Magritte, Berenice Mendonca, Martina Rodie, David Sandberg, Richard Sinnott, John Watt. Apologies: John Achermann, Hughes, Claudia Wiesemann ACTION Welcome The chair welcomed everyone to the 3rd Steering Committee Meeting. Approval of Minutes of 2nd SC Meeting The minutes of the 2nd Steering Committee were approved. Action Points Update All SOP revisions (including the revised patient information leaflets and consent have been completed and approved by the Local Ethics Committee (v.2.0 date: 091012) I-DSD Symposium is now underway. FA thanked FD for her idea of a new investigator’s workshop before the symposium which seemed to have been a success Networks and resources were identified for publicity for I-DSD symposium. An empty registry was created for anybody interested in looking at an empty version of the registry EuroDSD website is now closed. A parallel session for family support groups was held at the I-DSD symposium on Saturday am A Research Flowchart has been added to the website in text form at the moment and will be developed further in the new web template. Research Studies are being collected and the list of known active, planned or recently completed studies was circulated to the Committee. A public version of this list will be added to the website. Feedback –Survey monkey planned to assess usefulness of the Registry Steering Committee term of office. JB went through the planned terms in the current Charter which are fixed. FA raised the need to diversify the composition of the committee. A list of suggestions will be circulated to SC for approval. JB JB JB FA Current Tasks Ongoing Revisions. JJ gave a summary of recent changes to the I-DSD Registry Reduction of the mandatory fields to the Core Info Module. This will more users to enter brief details of cases.