Survey to Identify Burdens and Unmet Needs of Patients With Epidermolysis Bullosa
Public ClinicalTrials.gov record NCT03158662. Field values are reproduced from the official study page; the official ClinicalTrials.gov record remains the source of truth for eligibility, enrollment, and contact information.
Data is sourced from official ClinicalTrials.gov public API records. Always review the official ClinicalTrials.gov record for the latest information.
Official title
Survey to Identify Burdens and Unmet Needs of EB Patients in the US
Brief summary
Reproduced verbatim from the official ClinicalTrials.gov record. Not medical advice.
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
Study identification
- NCT ID
- NCT03158662
- Recruitment status
- Completed
- Study type
- Observational
- Phase
- Not listed
- Enrollment
- 150 participants
Conditions and interventions
Conditions
Eligibility (public fields only)
- Age range
- 18 Years and older
- Sex
- All
- Healthy volunteers
- Healthy volunteers not accepted
This page does not interpret eligibility. Detailed inclusion and exclusion criteria are on the official ClinicalTrials.gov record.
Study timeline
- Start date
- Apr 1, 2017
- Primary completion
- Jun 29, 2017
- Completion
- Jun 29, 2017
- Last update posted
- Aug 23, 2017
2017
United States locations
- U.S. sites
- 1
- U.S. states
- 1
- U.S. cities
- 1
| Facility | City | State | ZIP | Site status |
|---|---|---|---|---|
| Amicus Therapeutics | Cranbury | New Jersey | 08512 | — |
Site contact phone numbers, emails, and investigator names are intentionally not displayed here. Open the official ClinicalTrials.gov record for site contact information.
About this trial record page
- What this page shows
- Public field values for ClinicalTrials.gov record NCT03158662, including study identification, conditions, interventions, eligibility (age, sex, healthy volunteer), timeline, and U.S. site list.
- What this page does not do
- No medical advice, eligibility judgments, treatment recommendations, study quality scoring, or AI-generated medical summaries. No site contact phone numbers, emails, or investigator names.
- Where the data comes from
- Sourced from the official ClinicalTrials.gov public API. The official record is the source of truth.
- Last refresh
- Last update posted Aug 23, 2017 · Synced Sep 14, 2026
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Open the official record
The complete protocol, eligibility criteria, and contact information for NCT03158662 live on ClinicalTrials.gov.