Table 5.

Fibrous Dysplasia / McCune Albright Syndrome: Surveillance to Consider

System/ConcernEvaluationFrequency
Musculoskeletal 1 Monitoring for progression of scoliosis & other skeletal findings by orthopedic surgeon or physiatristRoutinely
CT of skullEvery 5 yrs or more frequently in younger persons, those w/severe disease, or if vision or hearing deficits develop
Radiographs to evaluate new or worsening symptoms & provide additional information about FD anatomy & bone qualityPeriodically
Endocrine Puberty (females) Eval for growth acceleration & other clinical signs of precocious puberty 2, 3At each visit
Bone age assessmentEvery 6 mos in those w/bone age advancement of ≥2 yrs
Puberty (males) Eval for growth acceleration & other clinical signs of precocious puberty 3, 4At each visit
Bone age assessmentEvery 6 mos in those w/bone age advancement of ≥2 yrs
Testicular physical examAt each visit
Testicular ultrasoundPeriodically
Thyroid Thyroid function tests (TSH, free T4, T3)Every 4-6 mos in children age <3 yrs & annually in children age >3 yrs throughout childhood if ultrasound abnormalities are present 5
Physical exam of thyroidPeriodically in those w/retained abnormal thyroid tissue following thyroidectomy 6
Thyroid ultrasoundPeriodically in those w/abnormalities on thyroid ultrasound or who have undergone thyroidectomy 6, 7
Adrenal 8 Assessment for clinical signs of hypercortisolism 9In infants at each visit
Assessment for signs & symptoms of late-appearing adrenal insufficiency in those w/history of Cushing syndrome that has spontaneously resolved 8At each visit
Pituitary Eval for growth acceleration & other clinical signs of GH excess
Serum IGF-1 levelsRoutinely through young adulthood in those w/craniofacial FD
Assessment for signs & symptoms of gallbladder disease in those treated w/somatostatin analogsPeriodically
Renal Serum phosphorus & 25-hydroxyvitamin D levels 1, 10
Eyes Eval by ophthalmologist (or neuro-ophthalmologist)Annually in those w/craniofacial FD
ENT Eval by audiologist
Gastrointestinal Assessment for evidence of hepatotoxicity for those on pegvisomantPeriodically
Oncology Consider breast cancer screening. 11Annually beginning earlier than recommended for general population

FD = fibrous dysplasia; GH = growth hormone; IGF-1 = insulin-like growth factor 1; T3 = triiodothyronine; T4 = thyroxine; TSH = thyroid-stimulating hormone

1.
2.
3.

Growth acceleration can also be a sign of growth hormone excess.

4.
5.

Individuals with abnormalities on thyroid ultrasound examination but normal thyroid function tests are at risk for the development of frank hyperthyroidism.

6.
7.

Thyroid tissue can regrow after thyroidectomy.

8.
9.

Routine biochemical surveillance for hypercortisolism is not indicated.

10.

To monitor for the development of FGF23-mediated hypophosphatemia and as part of routine bone health

11.

From: Fibrous Dysplasia / McCune-Albright Syndrome

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