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

Disclosure Statement I have nothing to disclose

The International DSD Registry ESPE DSD Registry International DSD Registry Local Clinician Registries Chicago Consensus European DSD Registry Local, National, International

Activity Between Main Activities Revision of the Registry Portal and ‘Create Record’ interface Revision of User accounts Development of the network website ( I-DSD Symposium Registry User Survey

I-DSD Registry

Create Record Modules Core Dataset

Create Record Modules Record ID & Optional modules

Activity between 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.

I-DSD Network Website

I-DSD Symposium 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

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

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%

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

Thank you I-DSD Autumn 2013 Newsletter Now available from the I-DSD website