International DSD Registry Newsletter Spring 2015

How can the Registry help improve DSD care? • The Registry consists of non-identifiable details of 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

I-DSD Symposium 2015

The 5th I-DSD symposium 2015 takes place in Ghent, Belgium on June 11-13, 2015. • Over 70 abstracts received. • Over 170 registrations to date. • Full scientific program available on the symposium

website (www.gla.ac.uk/idsdsymposium). • On-line registration open until 4th June with concession

rates available (www.idsd2015.eventbrite.co.uk) • Prizes for best oral and poster presentations sponsored by

Karger. • Travel grants for participants from developing countries

and patient representatives. • 15 hours CME accredited by EACCME.

For more information, contact the I-DSD office.

DSD-WG update The forthcoming ESPE newsletter features an update on current DSD-WG activity, recent outputs and plans for the coming year.

Other meetings ESPE in Barcelona on 1-3 October 2015. www.espe2015.org ISHID Hypospadias Workshop – Frankfurt 22-24 June 2015 www.ishid-hypo2015.com

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. See the I-DSD website or contact Jillian Bryce for more information.

Steering Committee Membership The I-DSD Steering Committee welcomes new member Richard Ross (University of Sheffield and chair of the I-CAH Executive) and thanks retiring member David Sandberg for his valuable guidance during his term.

Standard Operating Protocol v4.0 Updated SOP and patient information leaflets and consent forms are available on the website www.gla.ac.uk/idsd. The main changes include participant access and clarification of data sharing.

COST DSDnet Over 70 applications were submitted for 30 trainee places at the forthcoming DSDnet Training School on ‘Holistic Care and DSD’ in Ghent on 8-10th June,

preceding the I-DSD symposium. The preliminary programme is available on www.dsdnet.eu.

I-CAH Registry A longitudinal module to capture data on CAH patients over several visits is in final testing phase and will be launched in May 2015. The module will support a pharmaceutical study conducted by the EU-TAIN project. Information on I-CAH is available on the website. www.i-cah.org

Patient Participation Patients who have been registered as participants on the Registry, or their guardians, are now able to access some sections of their own record via a secure login process organised through their clinical centre. Step-by-step instructions are available at www.i-dsd.org

Survey Policy The I-DSD Registry has produced a policy on the use of the registry for conducting surveys. Only approved surveys will be supported by the registry. The full policy is available on the

website www.gla.ac.uk/idsd.

Registry Statistics (April 2015) • 1638 cases, uploaded by 33 centres in 20 countries • 212 registered users, 135 users have used the Registry in

the last 12 months • 95% of users are clinicians, 3% non-clinical scientists. • 17 users from 8 countries developing or performing studies

using the Registry • Become an I-DSD user to find out more about the studies

I-DSD Registry on Facebook You can now connect with the I-DSD Community via Facebook. www.facebook.com/idsdregistry

Contact us if you are interested in the I-DSD Registry 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 2015 newsletter should be submitted by August 15th