I-DSD and I-CAH Registry Update by Jillian Bryce
"Explore the evolution, registered centers, user activity, and main activities of the I-DSD and I-CAH Registry from 2007 to 2014. Learn about the significant contributions and developments in this field by Project Manager Jillian Bryce."
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The I-DSD and I-CAH Registry Update Jillian Bryce I-DSD/I-CAH Project Manager Presentation available at www.i-dsd.org
Disclosure Statement I have nothing to disclose
Evolution of the I-DSD Registry 2007-2008 2008-2011 2011-2016 MRC: Medical Research Council: Leading science for better health ESPE DSD Registry European DSD Registry International DSD Registry 2014-2016
Registered Centres & Users 2014 Numbers of Users Registering List Of Countries By Continent 2014 36 EUROPE Austria AFRICA AUSTRALIA Algeria Australia 2013 55 Belarus Egypt 2012 32 Belgium Malawi NORTH AMERICA 2011 15 Bosnia and Herzegovina Morocco Canada 2010 30 Cyprus Nigeria Mexico Czech Republic Sudan USA 2009 13 Denmark 2008 4 Estonia France ASIA SOUTH AMERICA China Argentina Germany Georgia Brazil Italy Hong Kong Colombia Registry Users Activity (185, 66% active) Lithuania India Indonesia Netherlands - 122 Clinical Users (15 also have Researcher access) 4 Researchers 59 Basic Users Poland Romania Israel Jordan new since Aug 2013 - - Serbia Kuwait Malaysia adding cases Spain Pakistan Sweden Russia Switzerland 109 Centres in 47 countries 33 uploading cases in 20 countries 1387 cases (August 2014) Upload rate around 100 cases per year Turkey Sri Lanka United Arab Emirates United Kingdom
Activity Between 2013-2014 Main Activities Surgical anatomical evaluation Registry development Biochemical test 5 2 Core dataset - mandatory CAH (live) Hypospadias (in final development phase) Patient Access to Own Record (in development) Transition (in development) Biochemical (in development) I-CAH Infacort study (in development) 6 15 15 13 11 1 - unimportant 4 13 2 - moderately important 8 3 - important 9 4 - very important Registry Governance Patient Access 6 Ethics Renewal of Registry New SOP 3.0 New and Retiring members of the Steering Committee 9 9 8
Research studies using the registry Primary research on existing cases or new cases to gather new datasets Secondary research on information already available Link to active studies on Registry Portal www.i-dsd.org to www.gla.ac.uk/idsd Research Studies 8 active (ongoing) studies Database of active studies 1 11 Outputs from recently completed studies (Incl. EuroDSD) 22
Output from Research Studies Cox et al 2014 JCEM 99: E348-E355
Output from Research Studies Kolesinksa et al 2014 Pediatrics 134 (3) 1-6
Output from Research Studies Jayasena et al 2014 Poster at ESPE: P-D-2-2-581
Future Plans Continued Development of New Modules Launch of Patient Access to Own Record Connecting with DSDnet to perform survey on clinical care Launch of I-CAH website Supporting I-CAH Infacort study Awarding of I-DSD Travel Grants Autumn Newsletter 5th I-DSD Symposium with COST Action DSDnet training school
I-DSD Symposium 2015 5th International Symposium DSD EACCME accreditation 11th-13th June 2015 I-DSD Training Workshop Ghent, Belgium Social Evening 18 invited speakers Excursion Parallel sessions Discounted Registration Guest Lecture
Thank you Thank you!
