NCT05708677

A Long-Term Extension Study for Participants Previously Treated With EB-101 for the Treatment of RDEB

Enrolling by Invitation
Not specifiedAges 6+Observational
Abeona Therapeutics, Inc
~22 participants
Updated 2026-07-17 on ClinicalTrials.gov
What's tested:EB-101

At a glance

Recruiting sites
0 of 2 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Wound Closure
Measured over 5 years
+10 more outcomes measured
RDEB
2 sites across 2 states
California1
Massachusetts1
  • Angela Iheanacho, MS · STUDY_DIRECTOR · Abeona Therapeutics, Inc
  • Sarah Abdelwahab, MD · STUDY_DIRECTOR · Abeona Therapeutics, Inc

This trial hasn't published a contact. View it on ClinicalTrials.gov

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Eligibility criteria

Inclusion

Willing and able to give consent/assent;
If under the age of 18, guardian(s) is/are willing and able to give consent;
Prior study treatment with EB-101.

Exclusion

Inability to properly follow protocol as determined by the Principal Investigator
  • Wound Closure5 years

    Proportion of RDEB wounds with healing ≥50%, ≥75%, and 100% at all clinic visits up to Month 54 as determined by direct investigator assessment.

  • Pain Severity Scale (Wong-Baker FACES)5 years

    Change in pain assessed by Wong-Baker FACES scale at all clinic visits up to Month 54. The minimum score value is 0 and the maximum score value is 10, with the higher scores being the worse outcome.

  • Itch Severity Scale5 years

    Longitudinal change of Itch severity scores assessed at all clinic visits up to Week 54. The minimum score value is 0 and the maximum score value is 10, with the higher scores being the worse outcome.

  • Zarit Burden Interview Scale5 years

    Longitudinal change of Zarit Burden Interview Short Form (ZBI-12) for caregiver scores related to wound care, assessed at all clinic visits up to Month 54. The minimum score value is 0 and the maximum score value is 4, with the higher scores being the worse outcome.

  • Quality of Life in Epidermolysis Bullosa5 years

    Quality of Life in Epidermolysis Bullosa (QOLEB) responses will be assessed at all clinic visits up to Month 54.

  • Caregiver Global Impression of Change for Pain Scale5 years

    Caregiver Global Impression of Change for Pain (CrGI-Pain) scores assessed at all clinic visits up to Month 54. The minimum score value is 1 and the maximum score value is 7, with the higher scores being the worse outcome.

  • Wound Infection and Adverse Events5 years

    The number of participants and wounds that have an infection or any related adverse event.

  • The number of treatment-emergent adverse events.5 years

    The number of treatment-emergent adverse events.

  • Serious Adverse Events5 years

    The number of participants and wounds that result in hospitalization (serious adverse event \[SAE\]).

  • Incidence of squamous cell carcinoma.5 years

    Incidence of squamous cell carcinoma.

  • Replication-competent retrovirus (RCR) status5 years

    Replication-competent retrovirus (RCR) status