Cohort profile: pathways to care among people with disorders of sex development (DSD).

ABSTRACT:

Purpose

The 'DSD Pathways' study was initiated to assess health status and patterns of care among people enrolled in large integrated healthcare systems and diagnosed with conditions comprising the broad category of disorders (differences) of sex development (DSD). The objectives of this communication are to describe methods of cohort ascertainment for two specific DSD conditions-classic congenital adrenal hyperplasia with 46,XX karyotype (46,XX CAH) and complete androgen insensitivity syndrome (CAIS).

Participants

Using electronic health records we developed an algorithm that combined diagnostic codes, clinical notes, laboratory data and pharmacy records to assign each cohort candidate a 'strength-of-evidence' score supporting the diagnosis of interest. A sample of cohort c

SUBMITTER: Goodman M 

PROVIDER: S-EPMC9494584 | biostudies-literature | 2022 Sep

REPOSITORIES: biostudies-literature