PeDRA Pearls

In Episode Two of Getting to Know Your Research, Dr. Kristen Berrebi discusses her 2020 PeDRA Research Grant, A Multi-Center Retrospective Cohort Study on the Utility of Ancillary Studies in the Risk Assessment and Management of Spitz Nevi, Atypical Spitzoid Tumors, and Spitzoid Melanoma in the Pediatric Population. Learn more about this project and the pivotal contributions of medical students and trainees in the research process.This podcast episode builds upon a previous Points of Discussion focused on Spitz Nevi. To listen to that discussion, please click here.

Dr. Yvonne Chiu discusses the findings of her collaborative study – Body site distribution of pediatric-onset morphea and association with extracutaneous manifestations. Learn about the different morphea categories, and whether or not certain locations of linear morphea are risk factors for extracutaneous involvement. This webinar originally aired in 2021. To view the video version of this presentation, please click here.

Dr. Streicher is an Assistant Professor at Indiana University School of Medicine. She’s currently co-chairing PeDRA’s Birthmarks Focused Study Group*. She became interested in pediatric dermatology while in medical school at Indiana University after completing a peds derm rotation with Dr. Anita Haggstrom. Her training took her to Georgia and Pennsylvania, and she’s come full circle back to Indiana to work alongside Dr. Haggstrom. Learn more about her work with the Birthmarks Focused Study Group and why she’s been reading so much by Julia Donaldson lately.*This episode originally aired in May of 2021. The Birthmarks Focused Study Group is now chaired by Denise Metry, MD and Maria Buethe, MD, PhD. For more information please visit www.pedraresearch.org.

In this episode, PeDRA Pub Club host, Donglin Zhang and guest panelists, Christina Boull, MD, Diana Reusch, MD, and Cristina Foschi, MD discuss a recent PeDRA publication, Clinical Characteristics of Infantile Hemangiomas with Aggressive, Persistent, and Destructive Ulceration. This collaborative, multi-site, retrospective study was originally published on October 16, 2023, in Pediatric Dermatology and was supported by a 2016 PeDRA Team Research Grant and a 2021 PeDRA Study Support Grant. Whether you’re a longtime pediatric dermatologist, currently in training, or a patient or advocate who wants to learn more about the latest research in pediatric dermatology, this podcast is for you. In an approachable roundtable discussion, listeners will gain insight into publications relating to pediatric dermatology and learn what the research means for patients and providers.

Hidradenitis Suppurativa (HS) expert, Haley Naik, MD of the University of California, San Fransisco joins Drs. Cotton and Lara-Corrales for a comprehensive discussion about diagnosis and treating early onset HS in the clinic and highlights the specific research taking place globally to help change outcomes for pediatric patients suffering from this devastating condition.

Welcome to "How We Made it Count," a special podcast that takes you behind the scenes of the Eczema Counts project. This collaborative effort, fueled by an engagement award from the Patient Centered Outcomes Research Institute also known as PCORI, aimed to educate and inspire caregivers, patients, and researchers alike. Through a series of virtual games and in-person sessions, Eczema Counts went beyond conventional approaches and brought a unique blend of gamification and patient-centered outcomes research to the forefront. Listen as key members of the project reflect on its impact, share their thoughts for the future, and dive into the fascinating world of pediatric dermatology research and the innovative partnership between the Pediatric Dermatology Research Alliance and the National Eczema Association. For more information visit PeDRA, the National Eczema Association, or Eczema Counts.

In case you missed it, PeDRA produced two sponsored webinars with Novan in the Spring of 2023. If you would like to view the video versions of these presentations, please click here. For more resources about molluscum, please click here.

As we gear up to release the first episode of our new Hidradenitis Suppurativa Podcast series, we dipping into the archives for a publication presentation from Dr. Irene Lara-Corrales about this international, multicenter, retrospective, cross-sectional study of 481 pediatric patients revealed a gap in diagnosis, and that HS patients are likely to suffer from other comorbidities. Learn more about the study, recommendations for managing patients with HS, and recommendations for future research. To view the video version of this presentation, please click here. Stay tuned for the upcoming HS series!

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. To view the video presentation of this program, please click here.

Season four of Getting to Know You shakes up our format with a new twist. This season, we are getting to know the amazing research that PeDRA members are doing. In our first episode, nurse practitioner, Emily Croce, PhD, MSN, APRN, CPNP-PC talks us through her 2022 Childhood Eczema Challenge grant, The Role of Outdoor Air Pollution on Disease Burden and Racial Ethnic Disparities. Learn how this project made use of existing data to reveal some key findings, the tools and methodology used in this study, and how this project is going to fuel future research into the intersection of atopic diseases and racial and ethnic disparities. You can view Emily's collaborative publication here.

Lisa Arkin, MD presents the findings of a PeDRA study: Clinical and Histologic Presentation of Pediatric Reactive Granulomatous Dermatitis. This program originally aired in May of 2020. To view the video version of this presentation, please click here.

In this mini Community Spotlight, PeDRA shines a light on The Association of Hidradenitis Suppurativa and Inflammatory Diseases (AHSID). Learn about the work AHSID does for the patient and provider communities in an interview with founder and CEO Jasmine Espy.AHSID has volunteer opportunities! If you are interested in volunteering, please click here to apply.To view the video version of this interview, please click here.

Olivia Davies, MD discusses the findings of a recent publication – Hamartomas and midline anomalies in association with infantile hemangiomas, PHACE, and LUMBAR syndromes. To view the video version of this program, please click here. This program originally aired in June of 2020.

Listen now to a special PeDRA Publication Presentation about a recent collaborative publication in the British Journal of Dermatology. Alexis Sokoloff is a young woman living with Down syndrome and hidradenitis suppurativa (HS), and together with Dr. Jillian Rork, Morgan Dykman, and Gwen Sokoloff, she discusses the publication and shares what she wants providers to know about treating HS in the Down syndrome community.

The Drugs and Bugs Focused Study Group presents a spirited conversation on whether Reactive Infectious Mucocutaneous Eruption (RIME) should be a separate condition from Stevens-Johnson Syndrome (SJS). Moderated by Dr. Michele Ramien, Dr. Erin Mathes, and Dr. Yvonne Chiu debate RIME, SJS, and other blistering severe cutaneous adverse reactions. In this three-part miniseries, episode one presents the case for RIME, episode 2 states the case for SJS, and episode three is a moderated discussion between the two opposing sides to highlight the research still needed to come to a consensus, while also shedding light on active research in this area. The program originally aired in June of 2023.

Past PeDRA Research Fellowship Grant recipient, Angel D. Pagan Gonzalez, MD, presents this single-site research study about the success of Dupilumab in children and adolescents. Dupilumab Improves Clinical Scores in Children and Adolescents with Moderate to Severe Atopic Dermatitis. To view the video version of this presentation, please click here.

Blistering severe cutaneous adverse reaction in children: proposal for pediatric-focused clinical criteria. 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 the next steps. To view the video version of this program please click here.

In episode four, Dr. Harper Price facilitates a dynamic conversation alongside Beth Drolet, MD, and Michael Howell, PhD, exploring the significance of investigator-initiated studies. They delve into the reasons behind its importance and provide insights on when and how to initiate such studies. The discussion emphasizes that collaborating with industry and spearheading a study can be a manageable and rewarding experience, dispelling any apprehensions.

Presented by the Acne and Hidradenitis Focused Study Group and moderated by Dr. Irene Lara-Corrales, Drs. A. Yasmine Kirkorian, and Izzy Andrews discuss the treatment options for pediatric hidradenitis suppurativa and highlight the research that is still needed to understand and treat this devasting disease effectively. Listen to learn more. The program originally aired in May of 2022.

The Down syndrome sub-group presents a discussion on the use of immune modulators in children with Down syndrome. Moderated by Dr. Jillian Rork, Drs. Emily Gurnee, Kristen Holland, and Kishore Vellody take a deep dive into skin conditions and treatments for children with Down syndrome and highlight exciting new research on the horizon. This program originally aired in February of 2022.

So you’ve got the funding, now how do you make the research happen? Hear from three funded PeDRA investigators and learn how they assembled their teams, tackled the paperwork, and got their projects off the ground. Don’t miss this great opportunity to learn from their experiences! This program originally aired in April of 2021. View the video version of this presentation here.

Join Jennifer Schoch, MD as she discusses the successes of the research program at the University of Florida Dermatology and the importance of funding. This program originally aired in July of 2020. To view the original webinar, please click here.

Listen as Dr. Jen Schoch moderates a podcast discussion on the pros and cons of sunscreen use in children under the age of 6 months. Joined by two esteemed guests, Dr. Irene Lara-Corrales, and Dr. Jeannette Jakus, this conversation identifies not only the pros and cons, but offers sunscreen alternatives, and discusses future potential research projects. This program originally aired in December of 2021.

Season three concludes with an interview featuring Sonal Shah, MD. Dr. Shah is the Director of Pediatric Dermatology at University Hospitals Rainbow Babies & Children’s Hospital and holds the position of Associate Professor of Dermatology at Case Western Reserve University School of Medicine. Alongside Dr. Leah Lalor, she is a co-founder and co-leader of PeDRA’s newest Focused Study Group (FSG) – Education. Tune in to discover more about Dr. Shah’s research and ways to get involved in the Education FSG.

This is part two of a two-part miniseries about the importance and value of patient partners. Learn how to engage patients as research and data strategy partners with Suz Schrandt.This program originally aired as a webinar in the spring of 2020. To view the webinar, click here.

The group discusses the current research and what the next steps are to better define these lesions, and when and how to treat them. They also answer questions from our live studio audience.To learn more about current PeDRA studies, please click here.

Dr. Berrebi discusses her parameters for monitoring vs. excision and Dr. Gerami discusses how to uncover the true nature of the lesion through a variety of testing options.

The group discusses the ever-changing terminology and why it matters. Listen as episode one lays the foundation for a great discussion on genomics.

We are rounding out EB Awareness Week with this Monday’s Podcast Rerelease. Originally airing in April of 2021, this Abeona Sponsored Webinar, Gene Therapy for Large Chronic Wounds in Recessive Dystrophic Epidermolysis Bullosa, was presented by Jean Tang, MD, PhD. Dr. Tang provided an update on the EB-101 pivotal Phase 3 VIITAL study and answered questions from the audience.To view the original webinar, please click here.

In honor of Epidermolysis Bullosa (EB) awareness week starting today, we are re-releasing an audio version of an Amryt Pharma-sponsored webinar that originally aired in December of 2021. Listen as Dr. John Browning from Baylor College of Medicine and Dr. Lara Wine-Lee from the Medical University of South Carolina discuss a promising new treatment for wound healing in EB patients. Click here to view the video version of this webinar.

PeDRA member, Colleen Cotton, MD, recently presented at the 2023 Symposium on Hidradenitis Suppurativa Advances (SHSA). In this episode, Dr. Colleen Cotton sits down with PeDRA to give a quick summary of the SHSA meeting and make a special announcement about an upcoming PeDRA educational initiative. SHSA is an annual meeting organized by the Hidradenitis Suppurativa Foundation (HSF) to bring experts from around the world to share their experiences with HS. ICYMI: PeDRA is thrilled to support HS Research through the 2023 Hidradenitis Suppurativa Pilot Grant! The deadline to apply is December 7, 2023 and you can learn more here.

PeDRA had the privilege of attending the Symposium on Hidradenitis Suppurativa Advances (SHSA) in Phoenix, AZ in October 2023. During the meeting, PeDRA’s Associate Director of Educational Programs interviewed three amazing presenters to discuss the incredible work being done in this space. First up is Lynn Petukhova, PhD, discussing her ground-breaking work in Hidradenitis Suppurativa (HS) genetics and how she harnesses the power of genome-wide association studies (GWAS). Following this, you’ll gain insight into more HS research through two poster interviews with MD candidates Nicholas Chiang and Sydney Dong, respectively. For more information on Dr. Petukhova’s work, or to submit a case study, please visit the Columbia University Data Science Institute. SHSA is an annual meeting organized by the Hidradenitis Suppurativa Foundation (HSF) to bring experts from around the world to share their experiences with HS.

Get to know Cristy Garza-Mayers, MD, PhD. Dr. Garza-Mayers is an Instructor at Harvard Medical School and a pediatric dermatologist at Mass General Brigham with an interest in vitiligo. In addition to her work on PeDRA's Early Investigator Committee, she also serves as a mentor through the PeDRA Mentorship Program and has received funding for her research projects through two grant programs. Learn more about her research, what led her to pediatric dermatology, and listen to the end to hear her answer some fun, rapid fire questions.

Join Dr. Dawn Davis from the Mayo Clinic for a conversation with two patient advocates as they discuss the patient experience with new and traditional AD therapies and share thoughts on how patients and providers can best work together. This program originally aired in December of 2020.

Monday Re-release continues with the first of two podcasts from the Emerging Therapies for Moderate to Severe Atopic Dermatitis in Children series. Listen as distinguished faculty in pediatric dermatology and allergy/immunology talk about new and emerging treatments and important research issues for moderate-to-severe atopic dermatitis in children. This program originally aired in November of 2020.

Industry 101 is back with Episode 3 – Working with Large and Small Pharma. In this episode, Dr. Harper Price discusses the differences between companies with special guests Dr. Michael Howell and Dr. Jim Lee. Listen to discover insightful strategies for networking with both large and small companies and learn how the differences between companies are not so vast after all. Click here to listen to previous episodes.

It’s Eczema Awareness Month, so this Monday Re-release is PeDRA’s first multi-episode educational series - Emerging Therapies for Moderate to Severe Atopic Dermatitis in Children. Listen to two programs originally aired as webinars in the fall of 2020. This episode features presentations about biologics, JAK inhibitors, and allergy perspectives for the treatment of pediatric atopic dermatitis. To view the original recording of this program, please click here.

Monday Re-release continues with the second webinar in the Emerging Therapies for Moderate to Severe Atopic Dermatitis in Children series – Pediatric Atopic Dermatitis: Algorithms for the Future. Featured guests offer presentations and discussions on emerging topical therapies, new and traditional systemics, considerations when choosing the right treatment for the right patient, and hot research topics for moderate-to-severe atopic dermatitis in children. To view the original recording of this program, please click here.

The final installment of the Building a Research Survey series is Preparing a Survey and Gathering Data. To view the original webinars, please click here.

Today’s Monday Re-Release is PeDRA’s three-part series on survey writing. Originally airing in the spring of 2021 as a webinar series, this three-part program provides a high-level overview of the design, execution, and analysis of an online research survey. Covering everything from building a survey team to sampling techniques to data collection and preparation for publication, this series will position investigators for success and protect the time and attention of busy survey respondents. To view the original webinars, please click here.

Continuing the Building a Research Survey series with part two – Designing an Online Survey. To view the original webinars, please click here.

This special episode is part of the Eczema Counts game, a collaborative education initiative between the National Eczema Association (NEA) and PeDRA. In this episode, you’ll hear from two leaders of the Eczema Counts project: Dr. Joy Wan, assistant professor of dermatology at Johns Hopkins University, and Silena Gaines, a caregiver for a child with eczema. Learn about how Dr. Wan and Silena have worked together to improve the quality of care and long-term outcomes for eczema patients, and how the Eczema Counts game has brought researchers, patients, and caregivers together to further their knowledge in patient-centered research. Click here to register for the PeDRA Conference.

Get to know the 11th PeDRA Annual Conference with special guests, Conference co-chairs Lisa Arkin, MD, and Esteban Fernandez Faith, MD. Learn more about the philosophy behind the PeDRA meetings, how to make the most of the meeting, and how patients are at the heart of our community collaboration. The PeDRA Conference is taking place in Atlanta, GA, November 9-11, 2023. Register Today!

Dr. Britt Craiglow interviews a patient family living with alopecia areata. Gracie, a 13-year-old, 8th grader shares her own alopecia areata experience with her rapid hair loss right before beginning middle school, and the importance of being involved in a clinical trial. Her inspiring story offers comfort to other children with alopecia areata and reminds us all why research is so important. Please note, this episode originally aired in September 2021.

Two of our dedicated PeDRA members, Amy Paller, MD and Andrea Rustad, a fourth-year medical student at Northwestern University Feinberg School of Medicine, recently published a children’s book, Skin-Vincible, in collaboration with the Foundation for Ichthyosis & Related Skin Types. Through the experiences of its main character, Cece, this book addresses skin differences and how to cope with bullies. Watch and learn how this book was made and why it’s an important tool for parents, teachers, and children in addressing bullying and differences. Click here to buy the book. To watch this interview on PeDRA's YouTube Channel, click here.

In part two of our Community Spotlight podcast featuring the Foundation for Ichthyosis and Related Skin Types (FIRST) you’ll hear from the Cina Family as they discuss the important role patient advocacy organizations play in supporting families. Sean and Jolie Cina have two children with ichthyosis – Portia (16) and Miles (12), and found FIRST shortly after Portia was born and diagnosed. Now, 16 years later, the family is more involved than ever with the FIRST community. Inspired by her own condition, Portia created and produced a documentary about living with ichthyosis, called Beneath the Skin (you can watch this and other related videos on Portia’s YouTube Channel here). Enjoy this episode as you learn more about ichthyosis and the Cina’s experience with FIRST.

Community Spotlight is back with new episodes and we’re proud to be shining a light on the Foundation for Ichthyosis and Related Skin Types, more commonly known as FIRST! This incredible organization has been supporting patients, families, and caregivers, as well as funding research for more than 40 years. Listen to Chief Executive Officer, Chris Boynton as he shares his journey into rare disease advocacy, and highlights ways both patients, families, and investigators can become involved.

Diana Zarowin is a fourth-year medical student at Albert Einstein College of Medicine. From the moment she joined PeDRA, Diana hit the ground running, participating in Focused Study Groups, applying for the PeDRA Mentorship Program, attending the PeDRA Annual Conference, and working with her mentors to prepare successful grant and fellowship applications. To date, she is the recipient of an Emerging Investigator Research Grant under the mentorship of Dr. Britt Craiglow and a PeDRA Research Fellowship award with Dr. James Treat. Most recently, she joined forces with Mattel to champion the Barbie Like Me campaign, putting dermatology-represented Barbies into the hands of young patients. Learn more about this incredible project, how her research supported by PeDRA has influenced her career aspirations, and the types of books she enjoys reading in her limited spare time. For more information about the Barbie Like Me campaign, please email PeDRA.

PeDRA member Emily Croce, PhD, CPNP-PC presents this collaborative research study that was partially funded by a 2021 PeDRA Research Fellowship: Validation of Remote Atopic Dermatitis Severity Assessment with the Eczema Area and Severity Index in Children Using Caregiver-provided Photos and Videos. To view the video version of this presentation, please click here.

We invite you to join us for the Innovation Forum taking place at the 11th PeDRA Annual Conference, November 9-11, 2023. The Innovation Forum is a workshop designed to engage conference attendees in learning how to identify important real-world problems related to pediatric dermatology and ways to develop innovative solutions to solve them. Led and facilitated by Lilit Garibyan, MD, PhD, Kachiu Lee, MD, and Yakir Levin, MD, PhD of the Magic Want Initiative. The deadline to enroll is 5pm PT, Thursday, October 12. Please click this link for more information or click here to register directly. If you have questions, please contact us at [email protected].