Nomenclature Study recently published in the International Journal of Pediatric Endocrinology (2015)
As the benefits of patient-centered care have become more widely recognized, it is important to
understand patients’ sentiments regarding aspects affecting their care. In an effort to display more sensitivity to
patient concerns, the term “disorders of sex development” (DSD) was proposed in 2006 as new nomenclature
to replace older terms that were considered to have negative connotations.
The objective of the study was to examine the views of congenital adrenal hyperplasia (CAH)
patients and their caregivers regarding the new nomenclature. The study was observational to evaluate the
views of the CAH community, and the primary endpoint was perception of the term DSD. The study was
conducted as a survey about views regarding DSD nomenclature. The survey was sent via email to eligible
subjects. Along with a short introduction explaining the term DSD, the survey was sent to eligible CAH
patients and their caregivers. 589 CAH patients or family members participated in the survey.
Use this link to read the published article and view the results: IJPE Publication DSD Nomenclature Perception