PeDRA Pearls

In this PeDRA webinar, sponsored by Amryt Pharma, Dr. John Browning and Dr. Lara Wine-Lee present new information on epidermolysis bullosa research, as well as answer audience questions.

To watch this webinar, please click here.

For more educational programming please visit: www.pedraresearch.org/education

In this very special Getting to Know You, we look back on how it all began with PeDRA’s first executive director, Sheila Rittenberg. She was brought on in 2013 and for six years, Sheila and the board of directors carefully laid the foundation for the organization we are today. Now, as PeDRA nears its 10th birthday, Sheila shares her personal connection to childhood skin disease and her hopes for PeDRA’s future. She also shares how she’s been able to nurture her creative side in retirement by working to produce a documentary film.

Blistering severe cutaneous adverse reaction in children: proposal for pediatric-focused clinical criteria (I will link this). Dr. Michele Ramien summarizes a collaborative study on blistering severe cutaneous adverse reactions (SCAR) in children. It’s very important to diagnose these reactions early and accurately as they can be life-threatening. The study created categories that are more appropriate for diagnosing pediatric patients than what existed in the past. Watch to learn more about the impact on patients and next steps.

Note to listeners: please turn up your volume.

Dr. Stein is the new PeDRA Biostatistician. Hailing from Arizona, Amy stumbled into a career in statistics near the end of her senior year as an undergraduate. One of her professors offered her a stop in the statistics graduate program at Baylor and it was there that Amy found her calling. She supports PeDRA investigators with everything from designing a stats-friendly study to teasing out data at the end of a study, all with a hands-on, energetic approach. When Dr. Stein isn’t tackling the stats, she’s baking cookies for every season with her children, and reading any book she can get her hands on.

In this final episode, Dr. Lindstrom and Dr. Frieden discuss the value of the program and changes that could be made to better serve patients and still protect the original aim of the program. Listen to learn more about how transparency might just be the key to achieving both the program goals, as well as supporting all patients fairly and safely.

In episode two of three, Dr. Ilona Frieden outlines the challenges providers and patients face with the iPledge program. Listen as Dr. Frieden raises important, thought-provoking issues like how the program impacts those who are not able to become pregnant and perpetuates health care access disparities. Dr. Ilona Frieden is a pediatric dermatologist and Professor of Dermatology at the University of California, San Francisco. She is the President of the Pediatric Dermatology Research Alliance and co-chair of the American Academy of Dermatology Association iPledge Workgroup.

In the first episode of this three-part miniseries, Is IPLEDGE Working? A Conversation on Risk Management and Isotretinoin, Dr. Leah Lalor talks about the program’s history with Dr. Jill Lindstrom. Listen as Dr. Lindstorm shares important information on the evolution of this REMS (Risk Evaluation and Mitigation Strategy) program for isotretinoin and how the program was molded into what it is today. Dr. Lindstrom is a practicing dermatologist at Walter Reed National Military Medical Center. She was previously the Deputy Director of the Division of Dermatology and Dental Products at FDA, where she worked for 17 years. 

Dr. Lalor is an Assistant Professor of Dermatology at the Medical College of Wisconsin and vice chair of PeDRA’s Acne and HS-Focused Study Group. Even though she had decided on dermatology as her specialty, she said she’d never be a pediatric dermatologist. That is until she went to the University of Cincinnati for her residency and fell in love with the field. Learn more about her research and be sure to listen to the very end for a special announcement.

Dr. Markus Boos discusses the influence of gender and sexual identity in adolescent skin health. His findings reiterate the importance of recognizing implicit bias and ensuring sexual/gender minority (SGM) children are being treated with the same holistic, respectful care as non-SGM children. Watch to learn more.

Watch the complete presentation here.

Medical student and PeDRA Member, Mitchell Braun outlines this collaborative, multi-site chart review of persistent dysesthesias in involuted infantile hemangiomas. Learn the definitions of some commonly used medical terms and recommendations for future studies.

Watch the complete presentation here.