Post on 31-Dec-2015
The International DSD Registry – An Update
Jillian BryceI-DSD Project Manager
Disclosure Statement
I have nothing to disclose
The International DSD Registry
ESPE DSD
Registry
International DSD Registry
LocalClinician Registries
Chicago Consensus
2003-2006 2007-2008 2008-2011 2011-2016
European DSD Registry
Local, National, International
Activity Between 2012-2013
Main Activities
• Revision of the Registry Portal and ‘Create Record’ interface
• Revision of User accounts
• Development of the network website (www.gla.ac.uk/idsd)
• I-DSD Symposium
• Registry User Survey
I-DSD Registry
www.i-dsd.org
Create Record Modules
Core Dataset
Create Record Modules
Record ID & Optional modules
Activity between 2012-2013
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
www.gla.ac.uk/idsd
I-DSD Symposium 2013
4th 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
2008
2009
2010
2011
2012
2013
0 5 10 15 20 25 30 35 40
6
15
32
15
35
37
Number of Registry Users Joining per Year
83 Centres in 40 countries23 uploading cases in 15 countries
List Of Countries By Continent
EUROPE AFRICA AUSTRALIA
Austria Algeria Australia
Belarus Egypt
Belgium Morocco NORTH AMERICA
Bosnia and Herzegovina Nigeria Canada
Cyprus Sudan Mexico
Czech Republic USA
Estonia ASIA
France China SOUTH AMERICA
Germany Hong Kong Argentina
Italy India Brazil
Netherlands Indonesia
Poland Israel
Romania Jordan
Spain Kuwait
Sweden Malaysia
Switzerland Pakistan
Turkey Sri Lanka
United Kingdom United 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
3
6
10
16
23
14
16
3
6
12
14
2
9
11
13
4
6
10
15
1 - unimportant
2 - moderately important
3 - important
4 - very important
1 2
12
11
14
9
15
16
8
11
3
4
9
9
4
3
7
12
1 - ineffective
2 - moderately effective
3 - effective
4 - very effective
n/a 25%
Registry User Survey
What features would you like to see introduced/developed in the Registry?(darker shade - highest importance)
New features
9
8
9
6
Limited access to patients of their own clinical records
4
8
9
13
E-Consultation
1
11
22
Database of active studies
5
13
15
Biochemical test2
6
11
15
Surgical anatomical evaluation
4
8
9
13
1 - unimportant
2 - moderately important
3 - important
4 - very important
Thank you
Thank you
I-DSD Autumn 2013 Newsletter
Now available from the I-DSD website www.gla.ac.uk/idsd