Table 6b.

Recommended Surveillance for Adults with Neurofibromatosis 1

System/ConcernEvaluationFrequency
Tumors Physical exam for neurofibromas, new or changing plexiform neurofibromas, & other signs/symptoms of malignancy by a clinical provider familiar w/the patientAnnually
Breast cancer (in
women w/NF1)
Mammography 1Annually beginning at age 30 yrs
Contrast-enhanced breast MRI 1Consider annually btwn ages 30 & 50 yrs.
Neurologic Neurologic assessment for neurologic deficit, headaches, seizures, sleep disturbance, & painAnnually. Note: brain MRI only as indicated based on clinically apparent signs or symptoms
Neuropsychiatric Assess for cognitive issues & depression.Annually or as needed
Skeletal Clinical assessment for scoliosis & osteoporosisAnnually
Serum vitamin D levelsAs needed
Cardiovascular
  • Blood pressure assessment
  • Clinical assessment for cardiac disease; assess for signs & symptoms of vascular complications
  • Monitoring known cardiac &/or vascular disease per cardiologist / vascular specialist
Annually
1.

The efficacy and cost-effectiveness of such screening have not yet been demonstrated [Howell et al 2017].

From: Neurofibromatosis 1

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