title: Disorders of sex development: summaries of long-term outcome studies.
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.
authors.affiliation: UPMC Hamot, Erie, PA, USA.
authors.forename: Justine
authors.initials: J
authors.lastname: Schober
authors.forename: Anna
authors.initials: A
authors.lastname: Nordenström
authors.forename: Piet
authors.initials: P
authors.lastname: Hoebeke
authors.forename: Peter
authors.initials: P
authors.lastname: Lee
authors.forename: Christopher
authors.initials: C
authors.lastname: Houk
authors.forename: Leendert
authors.initials: L
authors.lastname: Looijenga
authors.forename: Gianantonio
authors.initials: G
authors.lastname: Manzoni
authors.forename: William
authors.initials: W
authors.lastname: Reiner
authors.forename: Christopher
authors.initials: C
authors.lastname: Woodhouse
mesh_terms: D002648:Child; D015897:Comorbidity; D003266:Continuity of Patient Care / Q000592:standards*; D012734:Disorders of Sex Development / Q000453:epidemiology* / Q000628:therapy*; D005260:Female; D006801:Humans; D007246:Infertility / Q000453:epidemiology*; D008297:Male; D010043:Outcome and Process Assessment, Health Care; D013995:Time