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Survey to Identify Burdens and Unmet Needs of Patients With Epidermolysis Bullosa

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Contents

clinicaltrials.gov/study/NCT03158662
Is a
‌
Clinical study
0

Clinical Study attributes

NCT Number
NCT031586620
Health Conditions in Trial
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Epidermolysis bullosa
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Trial Recruitment Size
1500
Trial Sponsor
Amicus Therapeutics
Amicus Therapeutics
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Clinical Trial Start Date
April 2, 2017
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Primary Completion Date
June 30, 2017
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Study Completion Date
June 30, 2017
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Clinical Trial Study Type
Observational0
Observational Clinical Trial Type
Case-Only0
Observational Study Perspective
Cross-Sectional0
Participating Facility
Amicus Therapeutics
Amicus Therapeutics
0
Official Name
Survey to Identify Burdens and Unmet Needs of EB Patients in the US0
Last Updated
August 24, 2017
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Study summary

This survey intends to collect information on key aspects of life with epidermolysis bullosa (EB), including diagnostic journey, treatment, management, daily living challenges, and overall psycho-social, socio-economic, academic and family impact. Objectives: * To understand the unmet needs for people living with EB in the US * To assess the differences/similarities in the management/treatment of EB patients (including wound care, symptom management and other issues) * To assess the EB patients' and caregivers' perceptions of current management/treatment * To assess the challenges and the burden of daily living with EB * To understand EB diagnostic journey (the time to diagnosis and by what type of healthcare provider) * To identify professional disciplines involved in the diagnosis and management of EB * To understand the psycho-social, socio-economic, academic, and family impact of EB

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