Table 12.

Recommended Surveillance for Males and Females with Adrenomyeloneuropathy (AMN)

System/ConcernEvaluationFrequency
Neurologic Assess for new manifestations such as changes in tone, symptoms of neurogenic bladder, bowel incontinence, &/or sexual dysfunction.Yearly
Educational/
Vocational 		Monitor educational & vocational training needs.At each visit
Psychiatric/
Behavioral 		Behavioral assessment for anxiety, attention, & aggressive or self-injurious behavior
Musculoskeletal Physical medicine, OT/PT assessment of mobility, self-help skills
Adrenocortical insufficiency Endocrine assessment
  • Males not yet known to have adrenocortical insufficiency: yearly ACTH & cortisol levels
  • Males w/known adrenocortical insufficiency: per treating endocrinologist, but at least yearly
  • Females: not warranted given rarity of adrenocortical insufficiency
Family/Community Assess family need for social work support (e.g., palliative/respite care, home nursing, other local resources), care coordination, or follow-up genetic counseling if new questions arise (e.g., family planning).At each visit

ACTH = adrenocorticotropic hormone; OT = occupational therapy; PT = physical therapy

From: X-Linked Adrenoleukodystrophy

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