By creating a collaborative network of researchers, PeDRA multiplies the power of individual scientists and enables them to work to together to tackle important questions and gaps in knowledge and therapeutics for pediatric skin diseases. Multicenter studies that are underway are listed below, with multiple other studies in planning phases. We welcome additional investigators and input!
Collaborative Study Policy and Application
Overview: PeDRA is committed to supporting high quality collaborative research in pediatric dermatology. The following policy will ensure that PeDRA studies are in line with the mission and vision of PeDRA and that ethical considerations are upheld. The following requirements have been put in place to qualify a project as a “PeDRA study” and carry that designation.
- Studies must have a minimum of three PeDRA members from three different institutions.
- Projects must have been discussed and approved by a PeDRA Working Group or one of its subgroups.
- The leader(s) of the PEDRA working group must approve the proposal after an assessment of the project’s feasibility and impact or importance.
- All studies will undergo final review by the Science Review Committee.
**Note: Not all research projects conducted by PeDRA members need to be designated as PeDRA studies. Some members may choose to conduct small research projects outside the scope of PeDRA, examples may include case series, projects done through prior collaborations, etc.
Process to be designated as a PeDRA study:
- Studies that were initiated at one of the two initial PeDRA Annual Conferences must submit the study application form for expedited review and approval.
- Complete the PeDRA Study Approval Form and submit it via the online application.
- Study approval forms will be reviewed and approved by the PeDRA Working Group leaders.
- The study forms will be forwarded to the Science Review Committee for final approval.
All PeDRA studies will be tracked and updated annually through the website.
The Burden of Pediatric Skin Disease — the “Big Study”
PeDRA is launching a cross-disease study to address the role of stigma in pediatric skin disorders – and how it relates to anxiety, depression, and social functioning of children with these diseases. Amy Paller and Sarah Chamlin of Northwestern University are the co-PIs. We are recruiting 3500 parent/child combinations in US and Canada. Click here to learn more, and to participate as a site in this innovative and important project.
- Multicenter Phenotype-Genotype analysis of Vascular Overgrowth Syndromes. **No longer accepting additional study sites** – Contact: Clinical Research Assistant – Katherine Mueller, Phone: 414-955-2846.
- Multicenter Retrospective Review of Beta Blocker Use in Young, Small, and Pre-term Infants for Infantile Hemangioma. – Contact: Wendy Kim, DO, Phone: 708-897-5608.
See additional details about Birthmarks
Genetic Skin Disorders
- Prospective Study of Newborns with Ichthyosis. – Contact: Brittany Craiglow, MD
- Yale Disorders of Keratinization Project. – Contact: Keith Choate, MD, PhD
- Gene Discovery and Genetic Diagnosis in Inherited and Mosaic Skin Disorders. – Contact: Keith Choate, MD, PhD
- Epidermolysis Bullosa Clinical Characterization and Outcomes Database (CCOD). – Contact: Anna Bruckner, MD
- Epidermolysis Bullosa Anemia study. – Contact: Anna Bruckner, MD
See additional details about Genetic Skin Disorders
Inflammatory Skin Diseases
- Prospective, observational study of the 4 major systemic agents available for severe atopic dermatitis. – Contact: Wynnis Tom, MD
- Morphea clinical registry and biobank. – Contact: Yvonne Chiu, MD
- A retrospective review of squaric acid for alopecia areata. – Contact: Nanette Silverberg, MD
See additional details about Inflammatory Skin Diseases