The Clinical Guidelines for the Management of Disorders of Sex Development in Childhood and Handbook for Parents featured at this site have been produced by a consortium consisting mainly of: (1) clinical specialists with experience helping patients with DSDs; (2) adults with DSDs; and (3) family members (especially parents) of children with DSDs. These handbooks are therefore unique in that they benefit from the experiences from the three groups (clinicians, patients, and parents) that comprise the DSD clinical triad. A number of the contributors have been in meaningful communication with dozens or even hundreds of individuals and families with personal experience of DSDs. They drew on those relationships in producing the Clinical Guidelines and the Handbook for Parents.
While these handbooks benefit from the large literature (medical, sociological, and autobiographical) available on DSDs, consultation with these three groups has helped to address the substantial evidentiary gaps in the medical literature on DSD treatment (e.g., the lack of evidence regarding long-term outcomes of current medical and surgical options). It has also provided an important three-way consensus surrounding the patient-centered care philosophy at the core of these guidelines.
The authors seek continued dialogue with those with personal and clinical DSD experience in order to refine these recommendations. These texts represent only the first of numerous anticipated editions.