• Skip to main content
  • Skip to footer

PeDRA

Pediatric Dermatology Research Alliance

  • End of Year Giving
  • Join PeDRA
  • Login
MENUMENU
  • Contact
  • Events
  • For Researchers
        • Grants & Awards
        • PeDRA Studies
        • Resources For Researchers
        • Education for Researchers
        • Early Career Support
        • Publications
        • Clinical Trials
        • Thank you to everyone who applied for a Research Grant, Consensus Grant, or Weston Career Development Award in December 2019.  Please keep an eye out for more funding opportunities from PeDRA in 2020.

  • For Patients & Families
        • Support
        • Education for Patients & Families
        • Engagement Award

           

          PeDRA has been selected for Engagement Award funding from PCORI to develop a skilled community of stakeholders committed to driving patient-centered research that improves the lives of children with skin diseases and their families.

  • Research Areas
        • Birthmarks
        • Genetic Skin Disorders
        • Inflammatory Skin Disease
        • Neonatal Skin
        • Skin Tumors and Reactions to Cancer Therapies (STARC)
        • Cross-Cutting Research
        • PeDRA Studies

           

          Applications being accepted for new and ongoing studies and surveys to receive special benefits as “PeDRA Studies.”

  • About
        • Mission & Vision
        • Leadership & Staff
        • Annual Reports
        • Patient Partners
        • Our Supporters
        • PeDRA is an independent nonprofit organization that serves as the research arm of the Society for Pediatric Dermatology.

Patient-reported medical needs of adults with EB – Survey Study

November 10, 2019 By Mike Siegel

Principal Investigator:

Christina Boull, MD – University of Minnesota

Overview:

This survey seeks to better understand the needs of adults with epidermolysis bullosa (EB). It will be disseminated through a number of channels, including on-line via patient advocacy organization websites.

Status:

Primary outcomes have been determined. The research team is now determining secondary outcomes to pursue with the survey and a data analysis plan before launching.

Filed Under: Active Studies, Genetic Skin Disorders

Reader Interactions

Footer

  • Join PeDRA
  • For Patients
  • For Researchers
  • Forum
  • Facebook
  • LinkedIn
  • Twitter
Sign up to receive emails from PeDRA
Join PeDRA
Donate

Copyright © 2019 · Pediatric Dermatology Research Alliance (PeDRA) · All Rights Reserved. · Privacy Policy