Additional Considerations

Clinical Studies & Trials

Additional Considerations

While there will always be risks associated with participating in a clinical trial, proper oversight ensures that these risks are reduced as much as possible. Clinical trials that are conducted according to international standards are reviewed by national regulatory agencies (e.g. U.S Food & Drug Administration; European Medicines Agency; Ministry of Health, Labour & Welfare) and are monitored by ethics committees or institutional review boards (IRBs). Ethics committees review, approve, and monitor each clinical study. Their role is to make sure the study is ethical and that the study participants’ rights, welfare and safety are protected. Any clinical trial you are considering participation in should be conducted by a qualified investigator, at a qualified clinical site, and should be monitored by a local ethics committee or IRB.

You should never feel pressured to participate in a clinical trial, and you should never have to pay in order to receive study medication.   

Should you decide that participating in a clinical drug trial is not for you, there are other options available for you to participate in research. Consider participating in the IFOPA’s FOP Registry, which is a vital tool for advancing our understanding about FOP. Or consider participating in the IFOPA’s FOP Biobank, which collects saliva, urine, blood, and/or teeth from people with FOP (or their family members) for research purposes.

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