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 ID: 513268
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Total Registry Users – 13494 Clinical Users from 65 centres 22 Research Users from 12 centres34 Basic Users from 24 centres 80 centres in total (some overlap occurs)99 (75%) have used Registry within last 12 months – ie Active Users
List Of Countries By Continent
EUROPEAFRICAAUSTRALIAAustriaAlgeriaAustraliaBelarusEgypt BelgiumMoroccoNORTH AMERICABosnia and HerzegovinaNigeriaCanadaCyprusSudanMexicoCzech Republic USAEstoniaASIA FranceChinaSOUTH AMERICAGermanyHong KongArgentinaItalyIndiaBrazilNetherlandsIndonesia PolandIsrael RomaniaJordan SpainKuwait SwedenMalaysia SwitzerlandPakistan TurkeySri Lanka United KingdomUnited Arab Emirates
I-DSD Registry – Summary Of Users, September 2013Slide2
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 casesAssociated 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 RegistryI-DSD Registry MetricsSlide3
When did you first receive User access to the Registry?What is your primary role?
How often do you use the Registry?
I-DSD Registry User Survey - 2013Of 134 registered users, 35 responded (26%), 35% of 100 active users**Active users have logged into the registry at least once in the past yearSlide4
Functionality Of The RegistryHow important are the following functions of the Registry for youHow effective is the Registry in addressing this function
Looking at own cases for audit and researchSearching for suitable cases for researchLooking for samples which are available for sharingDesigning new studiesSearching for experts to discuss rare conditionsn/a 25%Slide5
Interaction In The RegistryFor how many cases entered in the Registry have you:
0
1-56-1011-2021-50In 2012 and 2013, have you used the Registry (to provide data or obtain data) for any of the following studies?Slide6
What features would you like to see developed in the Registry? (darker shade - higher importance) New featuresSlide7
Other CommentsScope to include information onPsychological outcomeSurgical outcomeTumourigenesisRegistry of guidelines & advice on managementRegistry of centres that perform molecular genetic studies