dsd-LIFE is a comprehensive clinical outcome study investigating medical, surgical, psychosocial and ethical issues to improve treatment and care of patients with the different diagnoses included in the umbrella term disorders/differences of sex development (dsd). The multidisciplinary dsd-LIFE consortium consists of 15 experienced European scientists in the areas endocrinology, psychology, surgery, gynaecology, urology and ethics. The fields of investigation of dsd-LIFE are HRQOL psychological well-being, psychosexual development, surgery, hormones, metabolism, patients view, ethics and cultural context.
In 2013 the study protocol and the online database have been developed in six languages. Patient support groups have contributed to the study protocol, Physicians, psychologists and nurses have received training on standard operating procedures (SOP) to perform the study in a standardized manner in all study centres. The study is conducted in Germany, United Kingdom, France, Sweden, the Netherlands and Poland.
The recruitment phase of participants has started in February 2014 (duration February 2014July 2015). Patients with the various diagnoses included in dsd are invited to partipate in the study: Turner syndrome, Klinefelter syndrome, congenital adrenal hyperplasia (CAH), impaired testosterone synthesis (e.g. 5-α-reductase-2 deficiency, 17-β-HSD-3 deficiency, LH-receptor defects), impaired androgen action (complete androgen insensitivity, CAIS; partial androgen insensitivity, PAIS), dysgenesis of the testes or ovaries, mixed gonadal dysgenesis, karyotype 46,XY/46,XX, 46,XX or 46,XY ovotestes, hypospadias. Participants should be 16 years or older.
Please inform your patients with dsd about the study. For further information how to participate in the study the local study centers are pleased to help. Please find detailed contact information of the local study centers on our website. Study flyers in the different languages are also available on the website. http://www.dsd-life.eu/participant-information-about-the-study/.
Funding: European Union seventh Framework Programme (FP7/2007-2013) under grand agreement no 305373.
20 - 22 Sep 2014
European Society for Paediatric Endocrinology