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Total Registry Users – 134 94 Clinical Users from 65 centres 22 Research Users from 12 centres

I-DSD Registry – Summary Of Users, September 2013. Total Registry Users – 134 94 Clinical Users from 65 centres 22 Research Users from 12 centres 34 Basic Users from 24 centres 80 centres in total (some overlap occurs)

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Total Registry Users – 134 94 Clinical Users from 65 centres 22 Research Users from 12 centres

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  1. I-DSD Registry – Summary Of Users, September 2013 • Total Registry Users – 134 • 94 Clinical Users from 65 centres • 22 Research Users from 12 centres • 34 Basic Users from 24 centres • 80 centres in total (some overlap occurs) • 99(75%) have used Registry within last 12 months – ie Active Users

  2. I-DSD Registry Metrics 1161 cases (August 2013) Median Year of Birth - 1996 (range 1927-2013) Majority of cases: 46XY (844), 46XX (203) Female - 664 (57%), Male - 497 (43%) Number of cases Associated conditions 294 (25%) History of infertility 88 (8%) Family history of DSD 232 (20%) Parental consanguinity 153 (13%) Samples available 492 (42%) Disorder Types in the Registry

  3. I-DSD Registry User Survey - 2013 Of 134 registered users, 35 responded (26%), 35% of 100 active users* What is your primary role? *Active users have logged into the registry at least once in the past year

  4. Functionality Of The Registry 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

  5. Interaction In The Registry 0 1-5 11-20 21-50 6-10

  6. New features What features would you like to see developed in the Registry? (darker shade - higher importance)

  7. Other Comments • Scope to include information on • Psychological outcome • Surgical outcome • Tumourigenesis • Registry of guidelines & advice on management • Registry of centres that perform molecular genetic studies

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