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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Dystrophic epidermolysis bullosa


Other Names for this Disease

  • DEB
  • Dermolytic epidermolysis bullosa
  • Epidermolysis bullosa dystrophica
  • Epidermolysis bullosa, dermolytic
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Research

Clinical Trials & Research for this Disease

  • ClinicalTrials.gov lists trials that are studying or have studied Dystrophic epidermolysis bullosa. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

Patient Registry

  • The EBCare Registry is a resource for individuals and families affected by all forms of epidermolysis bullosa (EB) and qualified researchers working on approved EB research projects. The Registry itself is a research project and the data collected through the Registry will help characterize the condition of people living with all types of EB.
  • ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.

General Clinical Trials & Research

  • NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.
Other Names for this Disease
  • DEB
  • Dermolytic epidermolysis bullosa
  • Epidermolysis bullosa dystrophica
  • Epidermolysis bullosa, dermolytic
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.