An International Cross-sectional Survey to Evaluate the Burden of Fibrodysplasia Ossificans Progressiva (FOP) on Patients and Their Families.

Completed

Conditions studied: Fibrodysplasia Ossificans Progressiva

In brief

The FOP burden of illness (BoI) survey aims to assess the impact of the burden of FOP on patients and their families. The study is being conducted online and available for residents in Argentina, Brazil, Canada, France, Germany, Italy, Japan, Mexico, Poland, Russia, South Korea, Spain, Sweden, the US, and the UK.

Key facts

Study ID

NCT04665323

Run by

Ipsen

People needed

411

Starts

2021-01-18

Expected to finish

2021-04-30

Last updated by the study team

2021-05-21

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Individuals meeting one of the two categories below (A or B) are eligible to participate: A. Any individual with FOP, of any age; B. Any individual who is a family member of a person with FOP (i.e. either a parent / legal guardian or a sibling) and who is aged 18 years and older
• All adult participants and parents / legal guardians of minors should provide informed consent before starting filling out the survey

You may not qualify if…

• Any individuals who are unable to complete the online survey independently or to get assistance to physically enter the answers

Where it is running

• Ipsen Central Contact — Cambridge, Massachusetts, United States

Full record on ClinicalTrials.gov

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