About the Society

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 committee members

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

Organisation and coordination

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

Grants, awards and any other recognition received

Active participation to the ESPE/LWEPS 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).

Negotiation of a EuroDSD consortium with the European Commission in the 7th European Framework Programme (2008).
Planned activities for the next 2 to 3 years
  • European Register for DSD (Chair F. Ahmed).
  • E-learning program (Chair S. Drop).
  • Collaborative clinical and basic projects steered through EuroDSD. (Chair O. Hiort)
  • Exchange of material and, eventually, 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.
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.
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, genetists, 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

September 20, 2008; Instanbul. Venue to be identified.

Contact for further information

Silvano Bertelloni
Adolescent Medicine, Department of Obstetric, Gynecology and Pediatrics, University Hospital,
56126 PISA - Italy
E-mail: s.bertelloni@med.unipi.it
tel: +39 050 992 743; fax: +39 050 993 044