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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| People living with FOP | |||
| Parent or legal guardian primary caregivers | |||
| Parent or legal guardian | |||
| Siblings |
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| Measure | Description | Time Frame |
|---|---|---|
| Quality of life of people living with FOP and their family members, measured using the EuroQol health-related quality of life (QoL) questionnaire (EQ-5D-5L) | Baseline | |
| Quality of life of people living with FOP and their family members, measured using the Patient-Reported Outcomes Measurement Information System (PROMIS) | Baseline | |
| Caregiver burden for the parent primary caregiver, measured using the Zarit Burden Interview (ZBI) | Baseline | |
| Responses to bespoke questionnaire describing the emotional burden on family members | Baseline | |
| Physical function of the person living with FOP, measured using the FOP Physical Function Questionnaire (FOP-PFQ). | Baseline | |
| Joint function of the person living with FOP, measured using Patient-Reported Mobility Assessment (PRMA). | Baseline | |
| Responses to bespoke questionnaire describing the types of healthcare services utilized by the person living with FOP over the last two years | Baseline | |
| Responses to bespoke questionnaire describing the frequency of utilization of healthcare services by the person living with FOP over the last two years. | Baseline | |
| Responses to bespoke questionnaire describing the impact of FOP on modifications to the living environment (e.g. home modifications) and travels. |
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Inclusion Criteria:
Exclusion Criteria:
1. Any individuals who are unable to complete the online survey independently or to get assistance to physically enter the answers
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Convenience Sample
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| Name | Affiliation | Role |
|---|---|---|
| Ipsen Medical Director | Ipsen | Study Director |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Ipsen Central Contact | Cambridge | Massachusetts | 02142 | United States |
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| ID | Term |
|---|---|
| D009221 | Myositis Ossificans |
| ID | Term |
|---|---|
| D009220 | Myositis |
| D009135 | Muscular Diseases |
| D009140 | Musculoskeletal Diseases |
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| Baseline |
| Responses to bespoke questionnaire describing the expenses paid by the family for the care of the person living with FOP | Baseline |
| Responses to bespoke questionnaire describing the Impact of FOP on education, employment, and career choices for people living with FOP and their family members | Baseline |