Requirements for a multicentric multidisciplinary registry on patients with disorders of sex development

J Pediatr Urol. 2012 Dec;8(6):624-8. doi: 10.1016/j.jpurol.2012.09.004. Epub 2012 Oct 9.


Disorders of Sexual Development (DSDs) are a group of rare to very rare congenital anomalies of the genito-urinary tract of genetic and endocrine causes. Recently, an international database I-DSD was successfully implemented to register patients with DSD and to provide the basis for epidemiologic, genetic, and clinical research. This tool needs to be adjusted and supplemented with additional modules in order to better assess the anatomical basis of DSD as well as to monitor risk factors such as gonadal histology. A proposal for the additional information to be obtained is discussed.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Child
  • Disorders of Sex Development* / epidemiology
  • Disorders of Sex Development* / genetics
  • Disorders of Sex Development* / surgery
  • Female
  • Humans
  • Interdisciplinary Communication*
  • International Cooperation
  • Male
  • Needs Assessment
  • Registries / standards*
  • Risk Factors