Patients and family members: what PeDRA means to you!
The Pediatric Dermatology Research Alliance (PeDRA) is a collaborative research network, providing a platform for scientists in the field of pediatric dermatology to collaborate and conduct research. PeDRA includes more than 280 scientists across more than 130 institutions as well as patient advocacy organizations, industry partners, and other supporters committed to improving the lives of children with skin disease. PeDRA works by identifying important research questions, providing support to help studies succeed, and building an empowered community through conferences and education.
PeDRA offers educational resources for patients and families.
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 us better understand diseases 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.
Life with Alopecia Areata: Patient, Parent, and Scientist
Rosie, her mom Paula, and Dr. Britt Craiglow of Yale University talk about living with alopecia areata, recent therapeutic advances, and the importance of continued research.
Clinical Trials and Research Studies
As a patient (or caregiver to a patient), participating in pediatric dermatology research might involve simple activities such as describing how you feel, answering questions about your experiences, or even just monitoring what happens over time with your skin. Also, sometimes tests such as blood draws or skin biopsies might be involved in skin research. Clinical trials are a type of research where volunteers try new treatments to see if they are safe and effective. Patient safety is always a major priority in any research study or clinical trial, and anyone considering getting involved in research should talk to their health care provider.
Focused Study Groups
Most of PeDRA’s research takes place within one of seven collaborative Focused Study Groups – Acne & Hidradenitis Suppurativa, Atopic Dermatitis & Psoriasis, Birthmarks, Connective Tissue & Autoinflammatory Disorders, Genetic Skin Disorders, Neonatal Skin Care, and Skin Tumors and Reactions to Cancer Therapies (STARC). Each study group consists of dozens of clinician scientists, working under the guidance of one or more leaders to identify novel research ideas, advance our understanding of childhood skin diseases, and identify the best ways to improve the lives of patients and their families. PeDRA is able to leverage the strength of these working groups to identify and pursue cross-cutting studies that address high priority research questions spanning many different pediatric skin diseases.
PeDRA is dedicated to connecting patients and families with advocacy and support groups. Whether you are struggling with a recent diagnosis or facing the daily challenges of a disease, there are organizations and resources that can help! PeDRA proudly partners with many patient advocacy organizations to ensure the patient voice is reflected in the research we do.