The National Foundation for Ectodermal Dysplasias (NFED) and researchers at East Carolina University (Dr. Maranke Koster & Shirley Parraga) are recruiting research subjects to participate in a new collaborative research project.
TP63 Research Project Goal
The goal of the project is to study the dynamic behavior of wounds that develop in patients affected by AEC and EEC. For example, we want to learn:
- How these wounds normally heal
- How long it takes for wounds to heal
- If wounds recur in the same areas
- How often new wounds develop
It is important to better understand these wounds, so that the effectiveness of future therapeutic interventions can be properly evaluated.
What does the research project involve?
Participants in this project will take photographs of their wounds at home.
Photographs will be taken using a loaner iPhone provided by the NFED that will be preloaded with an app designed to image wounds. One of our study team members will provide you with training on how to use this app.
You will be asked to photograph your wound(s) once every two weeks so that we can track the wound(s) over time. The images will be reviewed and analyzed by the research team.
You will not need to travel to participate in this study, and no medical procedures will be performed.
Are You interested in participating as a TP63 research subject?
If you are interested in potentially participating in this research project, please fill out this survey.
If you have any questions please contact Dr. Maranke Koster, Professor at East Carolina University (kosterma20@ecu.edu) or Mary Fete, Executive Director of the NFED (info@nfed.org).