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Table 2 Criteria for defining CCC surgical centers of excellence.

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

(i) Comprehensive care team including endocrinology, anesthesiology, uroradiology facilities, intensive care unit, ancillary support staff
(ii) Surgeons are fellowship-trained and board-certified (subspecialty certification) in pediatric urology or pediatric surgery
(iii) Training must have included considerable exposure to CAH surgical techniques, with a minimum of 5 CAH feminizing
genitoplasty surgeries.
(iv) Surgical volume must reflect ongoing interest and competence
(v) Surgeons designated as CCC surgeons must have completed at least 10 CAH surgeries as an attending surgeon within the prior eight
years from date of application.
(vi) Peer-reviewed publications related to genital surgery in CAH patients
(vii) Multidisciplinary conference at least once every 3 months
(viii) Outcome measures and submission of data to a national CAH registry
(a) Type(s) of surgical procedure(s), age at operation, complications, and initial surgical outcome 1 year postoperatively
(b) Numbers of operations and complications
(c) Pubertal evaluation for general appearance, void function, and vaginal patency for menses and tampon use
(d) Evaluation at time of desire (or potential) to begin sexual activity to assess adequacy of vaginal caliber for intercourse (self-dilation
versus revision may be needed)
(e) Long-term followup at age 18 or older: the most important followup is assessed from the patient's point of view, involving detailed
questionnaires (psychosocial, sexual, and functional/anatomical) and interviews by independent assessors. Evaluation for general
appearance, void function, vaginal patency, and clitoral sensitivity should be performed
(f) Data on adult quality of life, sexual functioning, obstetric history, and continence should be collected and assessed to determine the
quality of the surgical techniques used and quality of postsurgical psychological support services and education of patients provided.