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

Ipsen

Status: Completed

Conditions: Fibrodysplasia Ossificans Progressiva

Study type: Observational

Funder types: Industry

Identifiers

NCT04665323

CLIN-60120-450

Details and patient eligibility

About

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.

Enrollment: 411 patients

Sex: All

Volunteers: No Healthy Volunteers

Inclusion criteria

1. 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
2. All adult participants and parents / legal guardians of minors should provide informed consent before starting filling out the survey

Exclusion criteria

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

Trial design

411 participants in 4 patient groups

People living with FOP

Parent or legal guardian primary caregivers

Parent or legal guardian

Siblings