Survey to Identify Burdens and Unmet Needs of Patients With Epidermolysis Bullosa
Completed
Conditions studied: Epidermolysis Bullosa
In brief
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
Key facts
- Study ID
- NCT03158662
- Run by
- Amicus Therapeutics
- People needed
- 150
- Starts
- 2017-04-02
- Expected to finish
- 2017-06-30
- Last updated by the study team
- 2017-08-24
Who can join
Age: 18 and older. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- Confirmed diagnosis of EB including subtype
- Resident of the US
- Informed Consent
- Patient must be 18 years or older
- If the survey is done by a caregiver, they must be a parent or legal guardian and must be 18 years or older to answer on behalf of a patient under 18 years or on behalf of a patient 18 years or older who is unable to answer for themselves.
- Must participate in and complete a one hour telephone interview
You may not qualify if…
- Patient failing to meet the inclusion criteria above
Where it is running
- Amicus Therapeutics — Cranbury, New Jersey, United States
Full record on ClinicalTrials.gov
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