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Table 1 Measuring success.

From: Guidelines for the Development of Comprehensive Care Centers for Congenital Adrenal Hyperplasia: Guidance from the CARES Foundation Initiative

Potential medical outcomes:
(i) Quality-of-life using validated surveys
(ii) Biochemical control of CAH
(iii) Symptomatic control of androgen excess (hair loss, acne, hirsutism, amenorrhea, etc.)
(iv) Compliance
(v) Adult height
(vi) Frequency of adrenal crises/hospitalizations
(vii) Reproductive function
(viii) Comorbidities (obesity, hypertension, metabolic syndrome, hirsutism/polycystic ovarian syndrome , testicular adrenal
rests , and myelolipomas)
Potential surgical outcomes (women):
(i) Number and types of surgeries
(ii) Complications (vaginal stenosis, urinary symptoms, urinary tract infections, etc.)
(iii) Functional and cosmetic results
(iv) Patient satisfaction
(v) Menstrual regularity, fertility
Potential behavioral health/psychosexual outcomes:
(i) Patient and family adjustment
(ii) Psychopathology (depression, anxiety, obsessive-compulsive disorder, eating disorders, substance abuse, etc.)
(iii) Sexual function
(iv) Gender identity