Name: Atebrioz (zilurgisertib) in Fibrodysplasia ossificans progressiva: Economic impact of diagnostic testing
Published: 2026-09-27T12:28:00-04:00

Product information and disease description Place of product in therapy Disease description Burden of Fibrodysplasia ossificans progressiva

Economic impact of diagnostic testing

3 evidence topics · 3 sources

Cost and availability of ACVR1 genetic testing as a barrier

“The ability to provide a clinical diagnosis of FOP is particularly valuable for individuals living in regions where genetic testing is either not available or cost prohibitive. However, where available, genetic testing can also be beneficial, particularly for individuals with an atypical genetic mutation or for those who have great toe malformations without HO” (opens the source at this quote in a new tab)
“However, there are also important ethical considerations over screening for a disease with no approved treatment, concerns over the risk of misdiagnosis based on clinical observation in newborns, and regulatory/cost-effectiveness barriers related to genetic testing.” (opens the source at this quote in a new tab)

Procedures performed before a correct diagnosis

“For 67% of patients, unnecessary invasive procedures (biopsies) were performed; 68% received inappropriate therapies.” (opens the source at this quote in a new tab)

“62.7% of patients received iatrogenic harm, with surgeries (26.9%), biopsies (25.4%), and punctures (17.9%) being the most common iatrogenic injuries experienced.” (opens the source at this quote in a new tab)

Recommendation for electronic health record prompts for ACVR1 testing

“And we recommend developing intelligent alert modules within electronic health record (EHR) systems to trigger FOP diagnostic prompts and recommendations for ACVR1 genetic testing based on symptom keywords such as'progressive joint stiffness'.” (opens the source at this quote in a new tab)

Price of ACVR1 genetic testing and cost of the diagnostic pathway

No evidence found.