International DSD Registry Newsletter
Spring 2014
How can the Registry help improve DSD care?
• The Registry consists of non-identifiable details of
Registry Statistics (Feb 2014)
people
with DSD in a secure clinical and research network
• The Registry contains contact details of clinical experts and
active researchers in the field of DSD
• Users can use this information to perform studies and discuss
rare conditions with other experts
Next I-DSD Symposium 2015
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An update of the I-DSD Registry is available at
www.gla.ac.uk/idsd (Survey)
1300 cases, uploaded by 31 centres in 19 countries
156 registered users, 104 users have used the Registry in
the last 12 months
95% of users are clinicians, 5% non-clinical scientists.
15 users from 7 countries developing or performing
studies using the Registry
Become an I-DSD user to find out more about the studies
COST - DSDnet
The I-DSD symposium 2015 will be organized by the joint Ghent
– Rotterdam DSD teams and will take place in Ghent, Belgium
on June 11-13, 2015. The symposium will be preceded by a
COST BM 1303 training school for early stage researchers and a
MC meeting. The preliminary program will be soon available on
the symposium’s website (www.gla.ac.uk/idsdsymposium). For
more information, contact the I-DSD office.
The new COST Action DSDnet is underway and currently
encompasses 18 European countries. A website will be
launched in April 2014 (www.dsdnet.eu). Call announced for
STSMs - funding for short visits by young researchers to
institutions in other COST countries. A Working Group
workshop is planned for Sept 2014. For further information,
contact olaf.hiort@uksh.de
Research Highlights from the I-DSD Registry
I-CAH Registry
- Novel Associations In DSD – Kathryn Cox et al. Novel
Associations in Disorders of Sex Development: Findings From
the I-DSD Registry. J Clin Endocrinol Metab 2014;99:E348 –
E355
- Trends In Sex Assignment in infants with DSD in the I‐DSD
Registry over the last 3 decades was presented by Zosia
Kolesinska (Poznan) at the Joint Meeting in Milan in Sept 2013.
The work has been submitted for peer review.
- Details of all research studies are available on the I-DSD
website www.gla.ac.uk/idsd (Research)
I-DSD Support Grants
I-DSD registry users can now apply for travel grants for
conference presentations or exchange visits that disseminate
or promote research related to the I-DSD Registry. Contact
Jillian Bryce for more information.
Glasgow Working Group
The Glasgow Working Group, launched at the I-DSD symposium
rd
in June 2013, produced its 3 Progress report January 2014.
The report contains updates from groups around the world
working towards improving the management and care in DSD.
GWG progress reports are available on the I-DSD website
www.gla.ac.uk/idsd (Advocacy Groups & Resources)
An I-CAH Registry, hosted by I-DSD, has been launched with a
specific module for CAH. There are already 230 cases
of CAH in the Registry. The development of a CAH
Registry will improve the inclusion of people with CAH as well
as those who manage CAH in the Registry. For further
www.i-cah.org
or
contact
information
visit
r.j.ross@sheffield.ac.uk
ESPE DSD-WG
th
The next DSD-WG meeting will take place in Dublin at ESPE 18
st
-21 September (www.espe2014.org). Invited speakers include
John Achermann, Clemens Kamrath, Svetlana Lajic, Michelle
Welsh, Lütz Wunsch.
NICHD Workshop ‘Growing up with DSD’
NICHD is holding a Workshop on 26-27 March to identify
gaps in knowledge about the effects of DSD in affected
individuals and to identify research questions that will
lead to a scientific evidence base. The clinical and
research experts and members of advocacy groups who
have been invited include two members of the I-DSD
Steering Committee, David Sandberg and Ieuan Hughes.
Contact us if you are interested in the I-DSD Registry
Rare Disease Registries
The EPIRARE project (www.epirare.eu) that was looking at an
EU Platform for Rare Diseases is now close to completion. Its
final deliverables will be published on its website in March
2014
Jillian Bryce
I-DSD Project Manager
Child Health,
Royal Hospital for Sick Children,
Yorkhill, Glasgow, G3 8SJ, UK
Jillian.Bryce@glasgow.ac.uk
www.i-dsd.org
Articles for the Autumn 2014 newsletter should be submitted by August 15th