Transcript The I-DSD Registry User Survey 2013

I-DSD Registry – Summary Of Users, September 2013
Total Registry Users – 134
- 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 – ie Active Users
New Registry Users Per Year
List Of Countries By Continent
EUROPE
Austria
Belarus
Belgium
Bosnia and Herzegovina
Cyprus
Czech Republic
Estonia
France
Germany
Italy
Netherlands
Poland
Romania
Spain
Sweden
Switzerland
Turkey
United Kingdom
AFRICA
Algeria
Egypt
Morocco
Nigeria
Sudan
ASIA
China
Hong Kong
India
Indonesia
Israel
Jordan
Kuwait
Malaysia
Pakistan
Sri Lanka
United Arab Emirates
AUSTRALIA
Australia
NORTH AMERICA
Canada
Mexico
USA
SOUTH AMERICA
Argentina
Brazil
2013
37
2012
35
2011
15
2010
32
2009
15
2008
6
0
10
20
30
40
Number of Active Users Accessing
Registry
last year
99
last 6 months
66
last month
27
last 2 weeks
19
last week
14
0
20
40
60
80
100
120
I-DSD Registry Metrics
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 cases
Associated 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 Registry
Non-specific
disorder of
undermasculi
nisation
12%
Disorder of
androgen
action
29%
Disorder of
gonadal
development
23%
Disorder of
androgen
synthesis
15%
Disorder of
androgen
excess
13%
I-DSD Registry User Survey - 2013
Of 134 registered users, 35 responded (26%), 35% of 100 active users*
When did you first receive User access to the Registry?
How often do you use the Registry?
0%
Before 2011
5%
10%
15%
20%
25%
30%
35%
> once a week
> once a month
2011
> once every 3 m
> once every 6 m
2012
> once a year
2013
Never
0%
10%
20%
30%
40%
50%
What is your primary role?
0%
10%
What are your secondary roles?
20%
30%
40%
50%
60%
5
3 1
Medical Care
Clinician
Researcher
22
Biochem Evaluation
11
Genetic Evaluation
Clinical Researcher
Genetic Counselling
Other
Psych Care
11
Other
18
*Active users have logged into the registry at least once in the past year
Clin Evaluation
Surgical Care
Functionality Of The Registry
How important are the following
functions of the Registry for you
How effective is the Registry in
addressing this function
1
2 3
Searching for suitable
cases for research
16
4
15
14
9
1
3
Looking at own cases
for audit and research
6
2
11
16
1 - unimportant
10
6
15
3 - important
1 - ineffective
2 - moderately effective
2 - moderately important
4
Searching for experts to
discuss rare conditions
12
4
3
12
3 - effective
4 - very effective
7
4 - very important
10
1
3
Looking for samples which are
available for sharing
6
14
11
12
8
3
2
9
Designing new studies
13
4
9
11
n/a 25%
6
9
Interaction In The Registry
For how many cases entered in the Registry have you:
Been asked for more information
Supplied blood and urine samples
3
1
2
In 2012 and 2013, have you used the
Registry (to provide data or obtain
data) for any of the following studies?
1
1
5
13
14
17
Been contacted by another user
to discuss a similar case
Supplied more information
5
1
Studies
Launched
2011-2013
24
1
None of the
above
9
10
4
17
0
1-5
6-10
11-20
Studies
Launched
2008-2011
21-50
New features
What features would you like to see developed in the Registry? (darker shade - higher importance)
Database of active studies
Biochemical test
1
Surgical anatomical evaluation
2
5
6
11
15
15
22
13
11
Limited access to patients of
their own clinical records
E-Consultation
4
6
1 - unimportant
9
13
8
13
4
2 - moderately important
8
3 - important
9
9
9
8
4 - very important
Other Comments
- Scope to include information on
- Psychological outcome
- Surgical outcome
- Tumourigenesis
- Registry of guidelines & advice on management
- Registry of centres that perform molecular genetic studies