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