For Patients

Patients and family members:  What PeDRA means to you!

The Pediatric Dermatology Research Alliance (PeDRA) is your research rock for skin disease in children.  Leading pediatric dermatologists and scientists from around the United States and the world have joined skills and expertise in pursuit of a common goal: fighting pediatric skin diseases.  Many children of all ages suffer daily, whether from the severe itch of eczema or the pain and blistering of rare genetic diseases such as epidermolysis bullosa.  It is our mission to pursue groundbreaking research so that we might discover underlying causes, better treatments, and one day, hopefully cures for many skin diseases. But, we need your help to make that dream a reality.

To see some of the diseases being investigated, please visit “Research Areas”.
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What is pediatric dermatology research?

Research is a broad term and can involve many different ways of exploring scientific questions. Examples you may hear about include “bench research” (in a laboratory) or clinical trials (testing new drugs).  Whatever the means, the common goal of research is to help improve clinical care and ultimately help patients and family members like you!

Scientists focus on their research over long periods of time and meet many challenges along the way. Funding to keep studies going, having the necessary equipment and technology, and being able to collaborate with other experts are some common examples of hurdles that researchers experience.

 

What does it mean to be involved in pediatric dermatology clinical research?

As a patient (or caregiver to a patient), participating in research often involves simple activities such as describing how you feel, answering other questions about your experiences with your disease, or even just monitoring what happens over time with your skin.  Also, sometimes tests such as blood draws or skin biopsies are necessary in skin research.  New treatments being developed may also be available for patients.  Importantly, patient safety is always a major priority in any clinical study.  Consider talking with your physician about which research options and studies might be best for you.