Table 4.

Recommended Evaluations Following Initial Diagnosis in Individuals with Fibrodysplasia Ossificans Progressiva

System/ConcernEvaluationComment
Overall Clinical staging based on published criteria (See Table 5.)
Hallux
malformations
Functional assessment w/orthopedist &/or physiotherapistRarely requires intervention
Heterotopic
ossification
Clinical assessment of extent of heterotopic ossification & impact on functionAvoid elective medical, surgical, & dental procedures.
Thoracic
insufficiency
syndrome
Consider pulmonary & sleep studiesIf clinical concern for mechanical respiratory insufficiency
Painful, recurrent
soft-tissue swelling
History & physical exam for areas of soft-tissue swelling
Other Consultation w/clinical geneticist &/or genetic counselor

Note: Further evaluation may be indicated for participation in clinical trials.

From: Fibrodysplasia Ossificans Progressiva

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