About the Society

European DSD Registry

ESPE Working Groups

ESPE DSD Working Group

Aims

Individuals with disorders of sex development (DSD) constitute a special group of persons with multi-faceted medical and social problems leading to increased care needs. In addition, due the complexity of DSD, special educational programmes need to be developed for the diverse range of professionals involved in the care of patients with DSD.

The aim of the Group is to bring together basic scientists and clinical physicians involved in this field to:

  • promote active research with special attention to cross collaboration between basic and clinical aspects;
  • develop and maintain a registry as a resource for research;
  • promote knowledge and education;
  • set standards of holistic care of patients with DSD.

Formation of group proposed by

Faisal Ahmed - UK
Silvano Bertelloni - Italy
Sten Drop - The Netherlands
Olaf Hiort - Germany
Ieuan Hughes - UK

Names of current committee members

Faisal Ahmed - UK (Coordinator)
Laura Audi - Spain (Secretary)
Sten Drop - The Netherlands
Olaf Hiort - Germany
Paul-Martin Holterhus - Germany
Anna Nordenstrom - Sweden

Organisation and coordination

Working Group Board is composed by Coordinator, Secretary and four more members. The working group organizes a yearly symposium during ESPE Annual Meeting where techniques and results are presented.

The programme of the Group’s meeting is organized by Faisal Ahmed, Laura Audi, Anna Nordenström and Paul-Martin Holterhus.

The European DSD Registry Panel consists of S Faisal Ahmed, Olaf Hiort and Richard Sinnott.

The ESPE DSD E-learning Programme is coordinated by Sten Drop.

Grants, awards and any other recognition received

Active participation to the ESPE/LWPES Consensus meeting on Intersex (Chicago, 2005).

ESPE Research Unit grant: Exploring the utility of a secure web-based register of disorders of sex development (2006).

The EuroDSD programme funded by the 7th European Framework Programme (2008).

I-DSD Registry funded by MRC UK (2011).

Planned activities for the next 2 to 3 years

  • I-DSD Registry (F. Ahmed).
  • E-learning program (S. Drop).
  • Collaborative clinical and basic projects (O. Hiort).
  • Exchange of material and personnel.
  • Formulate guidelines for more appropriate and earlier intervention aiming to better management of DSD individuals in childhood and adulthood.
  • Collaboration with patient support group.
  • Participation in surgical workshop in 2012.

How the proposed group will add value to existing ESPE activities

The ESPE DSD Group has the potential to

  • become the forum for guiding ESPE in issues relating to DSD;
  • oversee and manage the ESPE DSD Register which will benefit ESPE members as well as others;
  • link with other specialist groups in the field of DSD;
  • strengthen the standard of collaborative research in DSD in Europe.
  • act as an advocate for affected people and their carers.
In addition, because a DSD presenting as ambiguous genitalia of the newborn is one of the most challenging clinical problems not only for the paediatric endocrinologists but also for neonatologists, geneticists, and all paediatricians, the Euro DSD group can act in a qualified supporting role for all these professionals as well as for families.

Meetings

Meetings will be held annually before or after the ESPE annual meetings.

Next meeting date, venue

20 September 2012, Leipzig.

Contact for further information

Dr. Laura Audí, Secretary, ESPE DSD Group
Pediatric Endocrinology Research Unit
Hospital Vall d'Hebron - Institut de Recerca
Passeig Vall d'Hebron 119 - 08035 - Barcelona - Spain
Tel/Fax: 34 93 489 40 30 - Email: laura.audi@vhir.org

Related Websites & Contacts

The EuroDSD Programme
http://www.eurodsd.com
Professor Olaf Hiort
hiort@paedia.ukl.mu-luebeck.de		 The European DSD Register
https://tethys.nesc.gla.ac.uk/
Professor S Faisal Ahmed
faisal.ahmed@glasgow.ac.uk