WP05 - Development of clinical guidelines and publication of results


The objective of WP 5 is development, provision and dissemination of evidence-based guidelines for better clinical care of patients with different genetic entities of DSD

  • To develop clinical guidelines
  • To provide clinical guidelines
  • To disseminate clinical guidelines

Work Package Description

Many important clinical decisions taken in childhood or adolescence have a major impact on later life of patients with DSD, but are currently hardly or not evidence-based. Moreover, health care providers, educational institutions and the general public are often not familiar with DSD conditions. For these reasons development of evidence-based guidelines and information on DSD are needed to improve clinical care and social life of individuals with DSD. The consortium will cooperate with European societies involved in clinical management of DSD for development of guidelines.

Task 1: Development of evidence-based guidelines for clinical care
Guidelines for clinical care will be developed through the analysis of outcome data of medical, HRQOL, psychosocial, ethical and cultural issues. Patients’ view and needs of the main different diagnoses XY DSD, Turner and Klinefelter syndrome and CAH being part of the pathogenic medical term DSD will be considered and emphasized. The guidelines will include concepts for counselling in the different periods of child development such as birth, childhood and adolescence. Moreover, they will comprise information and education concepts for other health care professionals about attitudes and management of DSD. The guidelines for the different diagnoses will be developed according to the European standards in close interdisciplinary cooperation with the boards of European societies as the ESE (European Society of Endocrinology), ESPE (European Society of Paediatric Endocrinology), EUPSA (European Paediatric Surgeons’ Association), ESPU (European Society for Paediatric Urology), EURAPAG (European Association of Paediatric and Adolescent Gynaecology), EUPSA (European Paediatric Surgeons Association), European Society of Psychology, EADP (European Association for Developmental Psychology).

Task 2 Dissemination of clinical guidelines
The guidelines will be announced at a symposium on new guidelines and will be disseminated through scientific meetings and the websites of the European societies (ESE, ESPE, EUPSA, ESPU, EURAPAG, EUPSA, EADP) and health care providers. Furthermore, the guidelines will be communicated to patient organizations to increase empowerment of the patients in self management of their condition.

Task 3: Publication of clinical guidelines
The guidelines will be published in scientific journals, on the websites of the national commissions for clinical guidelines and journals of other health care providers.