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Disorders of sex development: summaries of long-term outcome studies

  • Justine Schober
  • , Anna Nordenström
  • , Piet Hoebeke
  • , Peter Lee
  • , Christopher Houk
  • , Leendert Looijenga
  • , Gianantonio Manzoni
  • , William Reiner
  • , Christopher Woodhouse

Research output: Contribution to journalReview articlepeer-review

53 Citations (Scopus)

Abstract

Existing outcomes for DSD individuals are inadequate because reports are based upon information collected retrospectively. This paper is presented to review existing data emphasizing information needed to lead to better future care, is based on presentations and discussions at a multi-disciplinary meeting on DSD held in Annecy in 2012, and is not intended to define the present status of management of each of the various DSD diagnoses. Rather it is intended to provide information needed to do studies regarding outcome data from the treatment of children with DSD by providing a summary of recommendations of 'patient-centered' topics that need investigation. The hope is that by being concerned with what is not known, new protocols will be developed for improving both early management and transition to adult life.

Original languageEnglish
Pages (from-to)616-23
Number of pages8
JournalJournal of pediatric urology
Volume8
Issue number6
DOIs
Publication statusPublished - Dec 2012
Externally publishedYes

Keywords

  • Child
  • Comorbidity
  • Continuity of Patient Care/standards
  • Disorders of Sex Development/epidemiology
  • Female
  • Humans
  • Infertility/epidemiology
  • Male
  • Outcome and Process Assessment, Health Care
  • Time

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