Table 6a.

Recommended Surveillance for Children with Neurofibromatosis 1

System/ConcernEvaluationFrequency
Eyes Ophthalmologic examAnnually until adolescence or as recommended by ophthalmologist; exam as needed in older children
Tumors Physical exam for neurofibromas, new or changing plexiform neurofibromas, & other signs/symptoms of malignancy by a clinical provider familiar w/the patientAnnually 1
Neurologic Neurologic assessment for neurologic deficit, seizures, headaches, & painAnnually 1. Note: brain MRI only as indicated based on clinically apparent signs or symptoms
Neurodevelopment
  • Developmental assessment by screening questionnaire
  • Neuropsychiatric assessment
As needed
Skeletal Clinical assessment for asymmetry & scoliosisAnnually throughout childhood until growth is complete 1
Assess for increased fractures.Annually
Cardiovascular
  • Blood pressure assessment
  • Clinical assessment for cardiac disease; assess for signs & symptoms of vascular complications
  • Monitoring of known cardiac &/or vascular disease per cardiologist/vascular specialist
Annually & prior to surgical procedures 1
Growth
deficiency 		Assess height & head circumference on NF1 specific growth charts.Annually throughout childhood
Endocrine
manifestations 		Assess pubertal development.Annually throughout early childhood
1.

Persons with NF1 whole-gene deletions, large or growing plexiform neurofibromas or intracranial tumors, symptomatic vascular disease, progressive osseous lesions, or other serious disease manifestations require more frequent targeted follow up.

From: Neurofibromatosis 1

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