The European Cooperation in Science and Technology (COST) has published a new consensus paper on the diagnosis and management of disorders of sexual development (DSD). It is hoped the publication will serve as a basis for uniform medical management of DSD throughout Europe.
The document has been produced by European doctors, psychologists, patients, and self-help groups, within the framework of the COST Action ‘DSDnet’, which represents 23 European Union Member States, three near-neighbouring countries and five international partner countries. The statement summarises evidence-based and experience-based recommendations for lifelong care and data collection in individuals with a DSD across ages and highlights clinical research priorities.
It recommends that sensitive and/or irreversible procedures, such as genital surgery, should be postponed until the individual is old enough to be actively involved in the decision whenever possible.
Genital assessments should be limited to a minimum and performed with great caution and with explicit consent, it advises. Repeated genital exams and the presence of multiple health professionals during physical examination should be strictly avoided, the statement says.
The document, which is published in Nature Reviews Endocrinology, also addresses the transition of care for individuals with DSD from paediatric to adult services.