Information about the study

dsd-LIFE is a clinical European study, which investigates clinical care and long-term effects of hormone therapies, experiences with surgery and psychological support in patients with different types of hormonal disorders of the gonads or adrenals. The study is funded by the European Union and is conducted in 15 European centers in France, Germany, the Netherlands, Poland, Sweden and the United Kingdom.

Purpose of and participation in the study
The purpose of the study is to improve clinical care of patients with distinct causes of impaired gonadal or adrenal function. Different hormonal and surgical therapies, the benefit of psychological counselling, general support and information of the person about her/his condition will be investigated and improved.

Clinical European guidelines for the different conditions shall be developed through the study. We are aware that needs for clinical care vary among the diagnoses. For this reason, guidelines for clinical care of Turner syndrome, Klinefelter syndrome, CAH, and XY conditions shall be developed respecting the different needs of the patients. Moreover, your views on the naming of your condition will be gathered and taken into account as we know that the medical umbrella term disorders of sex development (DSD) is not appreciated by many persons.

A further aim of the European study group is to enhance information and knowledge for health care professionals, educational institutions and the general public about the different conditions included in the DSD classification.

The name of the conditions
From a pathogenic medical view conditions with impaired gonadal or adrenal function are part of the medical umbrella term disorders of sex development (DSD), which includes following diagnoses:

  1. Uncommon sex chromosomes including mainly Turner syndrome, Klinefelter syndrome and mixed gonadal dysgenesis (45,X0/46,XY);
  2. XY conditions including testicular dysgenesis, disturbances of testosterone synthesis or action;
  3. XX conditions including ovarian dysgenesis, congenital adrenal hyperplasia (CAH) and agenesis of the uterus.

Study participation
If would like to participate in the study you can read more about the study under your study participation and in the flyer.

If you have any questions do not hesitate to contact your local study center. Addresses and other contact information can also be found under flyer and contact information on this site.