PeDRA

Pediatric Dermatology Research Alliance

For Patients

Town Hall: Impacts of COVID-19 on Children with Dermatological Disease

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In collaboration with PeDRA, GlobalSkin hosted a virtual townhall on June 30, 2020 with Dr. Kelly Cordoro and Dr. Amy Paller to discuss the impact of COVID-19 on children and action being taken by the pediatric dermatology researchers.

GlobalSkin, also known as the International Alliance for Dermatology Patient Organizations (IADPO), is a nonprofit organization supporting more than 160 patient associations across more than 50 countries. They seek to improve the lives of patients with all skin disease through advocacy, education, networking, and research. To learn more, visit the GlobalSkin website.

Webinar: Hamartomas and midline anomalies in association with infantile hemangiomas, PHACE, and LUMBAR syndromes

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Olivia Davies, MD Candidate and PeDRA Fellow discusses the findings of a recent publication – Hamartomas and midline anomalies in association with infantile hemangiomas, PHACE, and LUMBAR syndromes.

Olivia Davies is a third year medical student at the Medical College of Wisconsin. She is currently the ’20-’21 PeDRA Fellow. Upon graduation from medical school, Olivia hopes to pursue a career in dermatology.

Podcast: A Roadmap for Navigating the New Eczema Treatment Landscape with Dr. Eric Simpson

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Through a special partnership with Global Parents for Eczema Research (GPER), PeDRA co-hosted a podcast interview with Dr. Eric Simpson from OHSU on June 5, 2020.  The podcast features a roadmap of new and emerging eczema treatments and Q&A with a small group of parents and early career PeDRA investigators.  Listen and share the 25-minute podcast, also available for download on these platforms:

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Webinar: Clinical and Histologic Presentation of Pediatric Reactive Granulomatous Dermatitis

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Lisa Arkin, MD presents the findings of a recent PeDRA study: Clinical and Histologic Presentation of Pediatric Reactive Granulomatous Dermatitis.

Lisa Arkin, MD is the Director of Pediatric Dermatology and Assistant Professor of Dermatology at the University of Wisconsin, Madison. She has been a member of PeDRA since it’s inception and has served on several committees. She is the principal investigator for several PeDRA studies and was recently awarded a PeDRA Research grant to support her efforts in working towards a precision-based treatment for facial port wine birthmarks. She is currently the Chair of the Early Investigators Committee and oversees the annual EI Forum at the PeDRA Conference and PeDRA Research Mentorship Program.

Webinar: Understanding Clinical Research

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Co-founding PeDRA member, Anna Bruckner, MD, MSCS provides an overview of what clinical research is, how it works, who benefits, and why it’s important.

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Anna L. Bruckner, MD, MSCS

Dr. Bruckner is Associate Professor of Dermatology and Pediatrics and at the University of Colorado School of Medicine and Director of Pediatric Dermatology at Children’s Hospital Colorado. She attended Northwestern University as part of the Honors Program in Medical Education, earning her MD in 1997. She completed residencies pediatrics and dermatology at the University of Colorado followed by a fellowship in pediatric dermatology at the University of California San Francisco. She maintains board-certification in dermatology and pediatric dermatology.

Dr. Bruckner is passionate about improving outcomes and quality of life for children with skin disorders through patient care, research, education and advocacy. Her academic interests include genetic skin disorders – particularly epidermolysis bullosa (EB), vascular anomalies, atopic dermatitis, and complex patients. She is the principal investigator for the Epidermolysis Bullosa Clinical Research Consortium, a network of North American EB care centers collaborating in clinic research aimed at improving the care and outcomes for patients with EB.

Dr. Bruckner is a founding member of the Pediatric Dermatology Research Alliance, has served on the Executive Committee and is currently chairing PeDRA Studies Committee.

Series: How Patients Fuel Innovation

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Both webinars in this miniseries are now available! Watch and listen as Suz Schrandt, JD discusses the important role patients play in capturing meaningful data and how PeDRA investigators can engage them as strategy partners in data collection.

Part One: Patients as Data Partners

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Part One: Patients as Data Partners SlidesDownload

Part Two: Patients as Strategy Partners

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Part Two: Patients as Strategy Partners SlidesDownload

Suz Schrandt is a patient and patient engagement advocate with a health and disability law background. She is the Founder and CEO of ExPPect, a patient engagement initiative aimed at putting skilled patient partners in the heart of healthcare innovation. Schrandt previously served as Director of Patient Engagement at the Arthritis Foundation, and as Deputy Director of Patient Engagement for the Patient-Centered Outcomes Research Institute (“PCORI”). Her career spans work in health reform, bioethics, genetic discrimination, and chronic disease self-management, as well as a long history in patient-led clinical training. Schrandt is one of nine voting members on the FDA’s inaugural Patient Engagement Advisory Committee, the Chairperson for the International Society of Pharmacoeconomics and Outcomes Research North American Patient Roundtable, and is an invited speaker at numerous US and international conferences. Schrandt received her law degree from the University of Kansas and has co-authored multiple peer-reviewed articles on health policy and the value of patient engagement.