Table 6.

Recommended Surveillance for Individuals with STAC3 Disorder

System/ConcernEvaluationRecommended Frequency
Growth PCP should monitor growth incl weight, height, & head circumference.At each visit
Neuromuscular Multidisciplinary neuromuscular clinic monitoring of:
  • Respiratory status, speech development, swallowing function
  • Musculoskeletal complications (e.g., scoliosis &/or joint contractures)
  • Infants age <12 mos: every 3-4 mos
  • Older children & adults: every 6-12 mos
Cleft palate Multidisciplinary craniofacial team:
  • Equipment & techniques for feeding infants w/cleft palate
  • Surgical repair timing & type of procedure determined by team
  • Anesthesiologist should be aware of risk of MH.
  • Audiologic eval as part of craniofacial team as needed
  • Infants: visit frequency determined by feeding & respiratory issues
  • Children: varies depending on comorbidities; at least annually
Feeding Multidisciplinary craniofacial team in conjunction w/PCP:
  • Measure growth parameters.
  • Evaluate nutritional status & safety of oral intake.
  • Consider clinical feeding eval &/or video fluoroscopic swallow study.
At each visit
Respiratory Pulmonologist:
  • Assessment of pulmonary status & pulmonary function testing
  • Polysomnography
  • Evaluate for signs of ascending or descending aspiration.
Clinical eval at least annually but likely more often during infancy or when any signs of respiratory insufficiency, aspiration, &/or sleep apnea develop
Speech Multidisciplinary craniofacial team:
  • Speech assessment by speech-language pathologist familiar w/cleft palate & neuromuscular contributors to speech issues
  • Consider speech therapy, surgical interventions, & augmentative communication devices.
At least annually

MH = malignant hyperthermia; PCP = primary care physician

From: STAC3 Disorder

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