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

NCT03158662 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 150

Last updated 2017-08-24

No results posted yet for this 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

Conditions

  • Epidermolysis Bullosa

Interventions

OTHER

Survey

Survey Study

Sponsors & Collaborators

  • Amicus Therapeutics

    lead INDUSTRY

Eligibility

Min Age
18 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2017-04-02
Primary Completion
2017-06-30
Completion
2017-06-30

Countries

  • United States

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT03158662 on ClinicalTrials.gov