EB Clinical Research Consortium

Status: Open / Recruiting


-    Diagnosis of EB

About the study:

We are currently looking for subjects to participate in a study of the characteristics of individuals with Epidermolysis Bullosa (EB). This is an observational study in which we will be conducting a chart review of subjects with EB. This is NOT a treatment study.

A national Epidermolysis Bullosa Clinical Research Consortium (EBCRC) has been created, consisting of a group of physicians dedicated towards treating patients with EB. The main focus of this group is to create a national database for the clinical characterization of Epidermolysis Bullosa.

The following sites are participating in the EBCRC:

  • •• Stanford University (Palo Alto, CA)
  • •• Children’s Hospital Colorado / University of Colorado (Denver, CO)
  • •• Children’s Hospital of San Antonio (San Antonio, TX)
  • •• Children’s Hospital of Philadelphia (Philadelphia, PA)
  • •• Children’s National Medical Center (Washington, DC)
  • •• Cincinnati Children's Hospital (Cincinnati, OH)
  • •• Columbia University (New York, NY)
  • •• Dell Children's Medical Center (Austin, TX)
  • •• Henry Ford Hospital (Detroit, Michigan)
  • •• Hospital for Sick Children, Toronto (SickKids) (Toronto, Canada)
  • •• Instituto Nacional de Pediatria (Mexico City, Mexico)
  • •• Northwestern University (Evanston, IL)
  • •• Phoenix Children’s Hospital (Phoenix, AZ)
  • •• Sainte-Justine Hospital University Center (Quebec, Canada)
  • •• Seattle Children’s Hospital (Seattle, WA)
  • •• State University of New York - Downstate (Brooklyn, NY)
  • •• University of California San Diego (San Diego, CA)
  • •• University of Massachusetts (Worcester, MA)
  • •• University of Miami (Miami, FL)
  • •• University of Minnesota (Minneapolis, MN)
  • •• Washington University (St. Louis, MO)

Contact at Stanford:

Study Coordinator: Claudia Teng 650-704-6359 ceteng7@stanford.edu  

The EBCRC is funded by the EB Research Partnership and the EB Medical Research Foundation

The EBCRC was utilized in the following studies:

Feinstein JA, Jambal P, Peoples K, Lucky AW, Khuu P, Tang JY, Lara-Corrales I, Pope E, Wiss K, Hook KP, Levin LE, Morel KD, Paller AS, McCuaig CC, Powell J, Eichenfeld LF, Price H, Levy ML, Schachner LA, Browning JC, Bayliss S, Jahnke M, Shwayder T, Glick SA, Bruckner AL. Assessment of the Timing of Milestone Clinical Events in Patients with Epidermolysis Bullosa from North America. JAMA Dermatology. Feb. 2019. 155(2):196-203. Link to PubMed.

Danial C, Adeduntan R, Gorell ES, Lucky A, Paller A, Bruckner A, Pope E, Morel K, Levy M, Li S, Gilmore E, Lane AT. Evaluation of treatments for pruritus in epidermolysis bullosa. Pediatric Dermatology. Sept. 2015. 32(5): 628-634. Link to PubMed.

Danial C, Adeduntan R, Gorell ES, Lucky A, Paller A, Bruckner A, Pope E, Morel K, Levy M, Li S, Gilmore E, Lane AT. Prevalence and characterization of pruritus in epidermolysis bullosa.  Pediatric Dermatology. Jan. 2015. 32(1): 53-59. Link to PubMed.