NCT00004761

Brief Summary

OBJECTIVES: I. Develop a large roster of well-characterized patients with various forms of inherited and acquired epidermolysis bullosa (EB). II. Generate a large data bank of clinical, historical, and genetic information concerning these patients. III. Accumulate donated tissue specimens, including selected cells and DNA, from selected patient subsets for the establishment of permanent tissue cell banks. IV. Promote and facilitate research in EB.

Trial Health

100
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

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Study Timeline

Key milestones and dates

Study Start

First participant enrolled

September 1, 1986

Completed
13.5 years until next milestone

First Submitted

Initial submission to the registry

February 24, 2000

Completed
1 day until next milestone

First Posted

Study publicly available on registry

February 25, 2000

Completed
Last Updated

June 24, 2005

Status Verified

July 1, 2004

First QC Date

February 24, 2000

Last Update Submit

June 23, 2005

Conditions

Epidermolysis Bullosa

Keywords

dermatologic disordersepidermolysis bullosagenetic diseases and dysmorphic syndromesrare disease

Eligibility Criteria

Age0 Years+
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
* Clinical diagnosis of epidermolysis bullosa

Contact the study team to discuss eligibility requirements. They can help determine if this study is right for you.

Sponsors & Collaborators

Related Publications (1)

  • Lin AN, Carter DM: Epidermolysis Bullosa: Basic and Clinical Aspects. New York: Springer Verlag, 1992.

    BACKGROUND

MeSH Terms

Conditions

Epidermolysis BullosaSkin DiseasesGenetic Diseases, InbornRare Diseases

Condition Hierarchy (Ancestors)

Skin AbnormalitiesCongenital AbnormalitiesCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesSkin Diseases, GeneticSkin and Connective Tissue DiseasesSkin Diseases, VesiculobullousDisease AttributesPathologic ProcessesPathological Conditions, Signs and Symptoms

Study Officials

  • James G. Krueger

    Rockefeller University

    STUDY CHAIR

Study Design

Study Type
observational
Observational Model
NATURAL HISTORY
Time Perspective
OTHER
Sponsor Type
NIH

Study Record Dates

First Submitted

February 24, 2000

First Posted

February 25, 2000

Study Start

September 1, 1986

Last Updated

June 24, 2005

Record last verified: 2004-07