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Table 1 Consensus statements

From: International physician survey on management of FOP: a modified Delphi study

 Definitive diagnosis of FOP requires genetic confirmation
 Infants or children diagnosed before the onset of flare-ups need annual clinical assessment
 In FOP patients diagnosed before the onset of flare-ups, flare-up prevention is recommended
Prevention of flare-ups
 The prevention of flare-ups involves recognizing known causes of flare-up (blunt muscle trauma, muscle fatigue, muscular stretching, intramuscular injections)
 In case of blunt muscle trauma, oral prednisone, for at least 3 days, should be considered to prevent flare-up
 Steroid prophylaxis is recommended for dental and surgical procedures
 There is no evidence that chronic treatment with NSAIDs prevents flare-ups or HEO
 Immunization by subcutaneous administration is recommended for all vaccines which can be administered by that route. For the other vaccines, risk/benefit of intramuscular administration should be discussed with patients or parents. No immunizations should be given during flare-ups
 In dental procedures, overstretching of the temporomandibular joint and mandibular blocks must be avoided
 Activity is encouraged at all ages, but passive range of motion must be avoided
Patient & family care
 Each patient should have a primary physician; not necessarily an FOP expert
 Patients and families should be informed about the IFOPA and country-specific support groups at the time of diagnosis
 Patients and their families should be educated about safe dental care
General clinical management issues
 FOP patients should be screened in childhood by audiometry for hearing impairment
 Occupational therapy, focused on enhancing activities of daily living, may be useful to improve the quality of life of FOP patients
 In patients with limited motion, prevention of pressure sores by appropriate devices or methods is recommended
 In patients with respiratory insufficiency, immunization for influenza and pneumococcal pneumonia should be considered
 An expert anesthesiologist experienced in general anesthesia for FOP patients must be consulted pre-operatively in all cases. Naso-tracheal fiberoptic intubation is the preferable mode of general anesthesia even with intact mouth opening
 In case of ankylosis of the jaw, a dietician should be consulted to ensure adequate nutrition
 If clinical examination suggests depression, psychological support is recommended