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

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)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 4 th 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 List Of Countries By Continent EUROPEAFRICAAUSTRALIA AustriaAlgeriaAustralia BelarusEgypt BelgiumMoroccoNORTH AMERICA Bosnia and HerzegovinaNigeriaCanada CyprusSudanMexico Czech Republic USA EstoniaASIA FranceChinaSOUTH AMERICA GermanyHong KongArgentina ItalyIndiaBrazil NetherlandsIndonesia PolandIsrael RomaniaJordan SpainKuwait SwedenMalaysia SwitzerlandPakistan TurkeySri Lanka United KingdomUnited Arab Emirates

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

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

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