Table 9.

Recommended Surveillance for Individuals with Fibrodysplasia Ossificans Progressiva

System/ConcernEvaluationFrequency
Musculoskeletal
  • Clinical eval w/orthopedist &/or clinical geneticist w/experience in managing FOP
  • Careful eval for scoliosis, which may be progressive
At least annually; more frequently when clinically indicated
Feeding
issues
  • Anthropometric assessment
  • Nutrition eval to monitor weight & caloric intake
  • Clinical history & physical exam for jaw ankylosis
Annually
Mechanical respiratory difficulties, incl thoracic insufficiency syndrome
  • Clinical history & physical exam for signs/symptoms of respiratory disease
  • Pulmonary assessments & sleep assessments
  • Echocardiogram
  • Baseline pulmonary function assessment, sleep assessments, & echocardiogram before age 10 yrs (earlier if indicated)
  • Annual clinical eval w/investigations as clinically indicated to guide specific respiratory therapies, incl positive pressure ventilation
Fracture risk
  • If corticosteroid treatment has been extensive, consider eval for corticosteroid-induced osteopenia/osteoporosis.
  • Eval for fall risk
Annually & as clinically indicated
Hearing loss Audiology assessmentEvery 12-24 mos
Nephrocalcinosis Clinical assessment for signs/symptoms of nephrocalcinosisAnnually w/additional investigations as clinically indicated according to signs/symptoms
Gastrointestinal Clinical assessment for signs/symptoms of gastric complications due to NSAID & corticosteroid managementAnnually & as clinically indicated
Pressure sores Eval of skin integrityAt each clinical visit
Oral health Age-appropriate dental examEvery 6 mos
Lymphedema Doppler ultrasound if underlying DVT suspectedAs clinically indicated

DVT = deep vein thrombosis; NSAID = nonsteroidal anti-inflammatory drug

From: Fibrodysplasia Ossificans Progressiva

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