Charité – Universitätsmedizin Berlin has finished an international research project, dsd-LIFE, that was conducted with the purpose to improve clinical care in individuals with differences of sex development (intersex conditions). Most of these hereditary conditions are referred to with the medical umbrella term disorders or differences of sex development (DSD)1 or intersex conditions. The term includes “Turner Syndrome”, “Klinefelter Syndrome” , “Congenital Adrenal Hyperplasia” and “Disorders of Androgen Synthesis or Action.” The conditions often lead to life-long hormonal treatment and, for some conditions, genital surgery. dsd-LIFE has investigated the quality of life, clinical care, long-term effects of hormone therapies, experiences with surgery, and psychological support in affected persons. The study is funded by the European Union and is conducted in 14 European centers in France, Germany, the Netherlands, Poland, Sweden and the United Kingdom.
The multidisciplinary European consortium dsd-LIFE wanted to evaluate and improve the treatment and care in the different conditions in close cooperation with patient organizations. These organizations have participated in all stages of the project. The project is unique in that it investigates issues which are not only relevant for care but also for empowerment of people with DSD.
“On March 21, 2017, we will present the main results to all patient support groups that have participated in the project and discuss the recommendations coming from these results. The meeting will take place in Berlin. We hope we have indeed been able to contribute to a better quality of life and health care for persons with DSD ” says PD Dr. Birgit Koehler, Charité, who is coordinating the project.
Contact for interested journalists:
PD Dr. Birgit Köhler
Charité – Universitätsmedizin Berlin
Institute for Experimental Paediatric Endocrinology
Augustenburger Platz 1
t: +49 30 450 566494