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The International DSD Registry – An Update Jillian Bryce I-DSD Project Manager

The International DSD Registry – An Update Jillian Bryce I-DSD Project Manager. Disclosure Statement. I have nothing to disclose. The International DSD Registry. Local, National, International. International DSD Registry. ESPE DSD Registry. European DSD Registry. Local

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The International DSD Registry – An Update Jillian Bryce I-DSD Project Manager

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  1. The International DSD Registry – An Update Jillian Bryce I-DSD Project Manager

  2. Disclosure Statement I have nothing to disclose

  3. The International DSD Registry Local, National, International International DSD Registry ESPE DSD Registry European DSD Registry Local Clinician Registries Chicago Consensus 2003-2006 2007-2008 2008-2011 2011-2016

  4. Activity Between 2012-2013 • Main Activities • Revision of the Registry Portal and ‘Create Record’ interface • Revision of User accounts • Development of the network website (www.gla.ac.uk/idsd) • I-DSD Symposium • Registry User Survey

  5. I-DSD Registry www.i-dsd.org

  6. Create Record Modules Core Dataset

  7. Create Record Modules Record ID & Optional modules

  8. Activity between 2012-2013 • User account management • Clinical User • Can upload cases. • Can view whole dataset of own cases and core dataset of all other cases. • Only centre lead can delete cases from their centre. • Research User • Can view whole dataset of all cases once approved. • Research access applied for a fixed 6 month period. • Access renewed upon submission of a report • Basic User • Can’t view any case data. • Can search other user’s profiles. • Accounts that are inactive for 12 months or more will be removed.

  9. I-DSD Network Website www.gla.ac.uk/idsd

  10. I-DSD Symposium 2013 • 4th International Symposium DSD • 3 Days • 140 participants • 18 invited speakers • 18 oral presentations • 14 posters • Workshop for young investigators (>50 participants) • Parent/patient support group session (>30 participants) • Evening Guest Lecture • Ceilidh • Trip to Loch Lomond • Positive Feedback through survey and general correspondence

  11. Registered Centres & Users 2013 • Registry Users Activity (75% active) • 94 Clinical Users (17 also have Researcher access) • 5 Researchers • 34 Basic Users 83 Centres in 40 countries 23 uploading cases in 15 countries

  12. Registry User Survey Searching for suitable cases for research Looking at own cases for audit and research Searching for experts to discuss rare conditions n/a 25% Looking for samples which are available for sharing Designing new studies

  13. Registry User Survey New features What features would you like to see introduced/developed in the Registry? (darker shade - highest importance)

  14. Thank you Thank you I-DSD Autumn 2013 Newsletter Now available from the I-DSD website www.gla.ac.uk/idsd

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