dsd-LIFE aims for sustainable improvement of clinical care for patients with difference or disorder in sex development (DSD) on European level. Settling the study protocol, the dsd-LIFE consortium will establish working groups for the areas psychosocial adaption, HRQOL and psychological well-being, psychosexual development, surgery, hormones and metabolism, patients’/parents’ view, ethics and cultural context. Patient support groups shall be contacted to integrate patients as well as parents views, ideas and concern for the study. The study protocol will be reviewed by the scientific advisory board and after that submitted for ethical approval to the local national ethical committees. A translation of the patients’ questionnaires is planned.
The recruitment of participants will start in 2014. It mainly will be performed by the study centres and associated hospitals and through patient support groups. Physicians, psychologists and nurses will receive training and standard operating procedures (SOP) to perform the study in a standardized manner in all study centres. Standard routines for quality assurance and data integrity will be implemented, queries and quality reports will be provided.
On basis of the data received the evaluation and development of clinical guidelines is set up, thoroughly coordinated by the project internal national coordinators, who closely interact with the project coordinator Dr. Köhler. The results of the study will be disseminated through scientific and health care societies and published in correspondent journals. They will further be disseminated to patients with DSD through the patient support groups.
Besides the ongoing development of evidence-based guidelines in working groups an advisory board of international experts with long-standing experience in DSD will accompany the consortium. The advisory board covers the major aspects of treatment and outcome of DSD; clinical care, surgery, psychology focussing on psychosexual development and ethics.
Moreover, dissemination of general knowledge about DSD to the public will be enhanced through dsd-LIFE.
On the following pages you will find more information about the group, the project and our dissemination activities as well as a contact form to get in touch with us.