EU research project seeks to improve care for patients with adrenal and gonadal hormonal imbalances

Oct 30 2013

New European research project coordinated by the Charité

The Charité - Universitätsmedizin Berlin is now commencing a new EU research project, dsd-LIFE, to improve clinical care in individuals suffering from hormonal disorders of the gonads and adrenals. The fifteen project partners in France, Germany, the Netherlands, Poland, Sweden and the United Kingdom will jointly investigate the established treatment methods and their long-term effects, such as hormone therapies, experiences with surgical interventions and psychosocial support. The project is funded by the European Union.

The conditions being researched include the "Turner Syndrome", the "Klinefelter Syndrome", "Disorders of Testosterone Synthesis or Action" and the "Congenital Adrenal Hyperplasia". They are grouped under the medical umbrella term "disorders of sex development" and are often associated with life-long hormonal treatment. "Disorders of sex development" is a term encompassing a large variety of adrenal and gonadal hormonal imbalances. It was introduced in 2005 through the International Consensus Conference on Intersex in Chicago with the aim of developing more patient-centered treatment. Appropriate terminology in this field is currently debated.

"Our multidisciplinary European consortium dsd-LIFE seeks to evaluate and improve the treatment of patients with these different conditions in close cooperation with patient organizations. We wish to contribute to a better quality of life for affected persons, to support doctors and psychosocial counsellors in taking good decisions and to create new information material for patients, relatives and anyone interested in DSD," says Dr. Birgit Koehler, project coordinator. "We are now asking patients to participate in our study and help us reach these goals", she adds.