These guidelines 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 guidelines are therefore unique in that they benefit from the experiences of 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 this work.
While this document benefits 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. This handbook represents only the first of numerous anticipated editions. Feedback may be provided by using the “contact” link available at http://www.dsdguidelines.org.
Note: Readers of this clinical handbook are encouraged to utilize the companion “Handbook for Parents” available through http://www.dsdguidelines.org. A pair of handbooks is also planned for adults with DSDs and for the clinicians who care for them.