RECRUITING

A Natural History Study of Corneal Abrasions in Patients With Dystrophic Epidermolysis Bullosa (DEB)

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

This study is a non-interventional, observational study that will evaluate the natural history of corneal abrasions in patients with Dystrophic Epidermolysis Bullosa (DEB).

Official Title

A Natural History Study of Corneal Abrasions in Patients With Dystrophic Epidermolysis Bullosa (DEB)

Quick Facts

Study Start:2024-08-02
Study Completion:2025-07
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06563414

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:6 Months
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. 1. The subject or their respective legal guardian must have read, understood, and signed an Institutional Review Board (IRB) approved Informed Consent/Assent Form and must be able to and willing to follow study procedures and instructions.
  2. 2. Age 6 months or older at time of Informed Consent/Assent.
  3. 3. Prior genetic diagnosis of DEB due to mutation(s) in the collagen type VII alpha 1 chain (COL7A1) gene.
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Study Contact

David Chien, MD
CONTACT
412-586-5830
dchien@krystalbio.com
Brittani Agostini, RN, CCRC
CONTACT
412-586-5830
bagostini@krystalbio.com

Study Locations (Sites)

Krystal Biotech
Pittsburgh, Pennsylvania, 15203
United States

Collaborators and Investigators

Sponsor: Krystal Biotech, Inc.

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2024-08-02
Study Completion Date2025-07

Study Record Updates

Study Start Date2024-08-02
Study Completion Date2025-07

Terms related to this study

Keywords Provided by Researchers

  • Dystrophic Epidermolysis Bullosa
  • DEB
  • Corneal Abrasions

Additional Relevant MeSH Terms

  • Epidermolysis Bullosa Dystrophica
  • Epidermolysis Bullosa Dystrophica, Recessive
  • Epidermolysis Bullosa Dystrophica Dominans