Transcript I-DSD and I-CAH Update for ESPE 2014

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
ESPE
DSD
Registry
2008-2011
European
DSD Registry
2011-2016
International DSD
Registry
2014-2016
Registered Centres & Users 2014
Numbers of Users Registering
List Of Countries By Continent
EUROPE
Austria
AFRICA
AUSTRALIA
2014
Algeria
Australia
2013
Belarus
Egypt
Belgium
Malawi
NORTH AMERICA
2012
Bosnia and Herzegovina
Morocco
Canada
Cyprus
Nigeria
Mexico
Czech Republic
Sudan
USA
ASIA
SOUTH AMERICA
China
Argentina
Denmark
Estonia
France
Germany
Georgia
Brazil
Italy
Hong Kong
Colombia
Lithuania
India
Indonesia
Netherlands
Poland
Romania
Jordan
new since Aug 2013
adding cases
Spain
Kuwait
Malaysia
Sweden
Pakistan
Switzerland
Russia
Turkey
Sri Lanka
United Arab Emirates
Serbia
United Kingdom
55
32
2011
15
2010
30
2009
2008
13
4
Registry Users Activity (185, 66% active)
-
Israel
36
-
122 Clinical Users (15 also have
Researcher access)
4 Researchers
59 Basic Users
109 Centres in 47 countries
33 uploading cases in 20 countries
1387 cases (August 2014)
Upload rate around 100 cases per year
Activity Between 2013-2014
Main Activities
• Registry development
Biochemical test
Surgical anatomical
evaluation
5
2
• Core dataset - mandatory
• CAH (live)
6
15
• Hypospadias (in final development phase)
15
13
11
• Patient Access to Own Record (in development)
1 - unimportant
4
• Transition (in development)
13
• Biochemical (in development)
3 - important
9
4 - very important
• I-CAH Infacort study (in development)
• Registry Governance
2 - moderately important
8
Patient Access
6
• Ethics Renewal of Registry
9
• New SOP 3.0
• New and Retiring members of the Steering Committee
9
8
Patient Information Sheets (multiple languages)
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
Database of active studies
1
to www.gla.ac.uk/idsd ‘Research Studies’
•
8 active (ongoing) studies
• Outputs from recently completed studies (Incl. EuroDSD)
11
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
•11th-13th June 2015
•EACCME accreditation
•Ghent, Belgium
•I-DSD Training Workshop
•18 invited speakers
•Social Evening
•Parallel sessions
•Excursion
•Guest Lecture
•Discounted Registration
Thank you
Thank you!