Your study participation

If you decide to participate, we invite you to have a physical examination and laboratory investigations to evaluate long-term effects of your hormone therapy. We will also gather important data of your medical history. Furthermore, we will ask you about your general and psychological well-being, your previous and current everyday experiences with your condition, potential sexual complaints and your experiences and satisfaction with previous and actual health care and treatment. 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.

All results of the medical exam will be reported back to you and you may receive clinical consultation and advice, should you be interested.

In case you do not wish the clinical investigations you may still participate in the study, because an additional important part of the study focuses on your well-being, your experiences and view on health care and patients’ rights.

Your data will be handled anonymously according good clinical practice (GCP).

You are invited to participate in the study if you have one of the following diagnoses

  • Turner syndrome
  • Klinefelter syndrome
  • Congenital adrenal hyperplasia (CAH)
  • Impaired testosterone synthesis (e.g. 5-alpha-reductase-2 deficiency, 17-beta-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

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