PeDRA Pearls

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.

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.

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.

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.

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.

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].

Bella Plumptre, MD is in her final year of dermatology residency at the University of Massachusetts. Hailing from England, Dr. Plumptre found her passion for pediatric dermatology while doing a pediatric dermatology rotation in London, where she “she found her people.” Cut to a few years later, she began studying in the US and sees herself in the academic setting in the future. Learn more about Dr. Plumptre’s research interests and global adventures, including her love of tandem biking all over the world.

Pachyonychia Congenita is a rare and extremely painful dermatologic disease. For many patients, a clear diagnosis isn’t even made until adulthood. PC Project aims to change that with a patient registry and free genetic testing. Patients and families come to PC Project for support from a community that knows and understands them, but also to advance the science. Due to the success of the international registry, data provided by patients is fueling research at an accelerated pace. You can learn more about PC Project and ways to get involved by visiting www.pachyonychia.org.

Pachyonychia Congenita is a rare and extremely painful dermatologic disease. For many patients, a clear diagnosis isn’t even made until adulthood. PC Project aims to change that with a patient registry and free genetic testing. Patients and families come to PC Project for support from a community that knows and understands them, but also to advance the science. Due to the success of the international registry, data provided by patients is fueling research at an accelerated pace. Hit play to learn about PC Project through a special interview with Janice Schwartz, PC Project’s Executive Director. You can learn more about PC Project and ways to get involved by visiting www.pachyonychia.org.

Hidradenitis Suppurativa (HS) is a devastating inflammatory skin disease that is painful, stigmatizing, and under-researched in the pediatric population. PeDRA is shining a light on this often-overlooked disease with HS Connect, a patient advocacy organization committed to promoting research and providing resources to everyone in the HS community. HS Connect offers virtual support groups, works with the medical research community, and promotes HS education and awareness all in the name of fueling research that will lead to better outcomes for those suffering from HS.

Hidradenitis Suppurativa (HS) is a devastating inflammatory skin disease that is painful, stigmatizing, and under-researched in the pediatric population. PeDRA is shining a light on this often-overlooked disease with HS Connect, a patient advocacy organization committed to promoting research and providing resources to everyone in the HS community. HS Connect offers virtual support groups, works with the medical research community, and promotes HS education and awareness all in the name of fueling research that will lead to better outcomes for those suffering from HS.

This is a rerelease interview from October 2021 with the National Eczema Association. Eczema’s range in severity means each patient experience is different from the next and no two stories are the same. Young Ella has lived with severe eczema since she was 8 months old. Now, as a 6-year-old in first grade, she’s finally able to experience some relief and feel like a “normal” kid. Ella and her mom, Amy share their story, how the National Eczema Association helped them navigate this disease, and how Ella was finally able to eat ice cream and go to the beach.National Eczema Association

In October 2021, PeDRA highlighted the National Eczema Association. This incredible organization supports patients, families, and caregivers, through a variety of activities and resources. NEA also supports research through a robust funding program, as well as its own research through surveys and the EczemaWise app. NEA’s Vice President of Scientific and Clinical Affairs, Wendy Smith-Begolka, MBS discusses the research taking place now and how future research will impact patients, families, and caregivers. www.nationaleczema.org

Part two of our community spotlight tells the story of a shy young woman struggling with atopic dermatitis and her journey to self-confidence through her experiences at Camp Wonder as both a camper and then a counselor. Mikaela, along with her mother Diana discuss how life-changing Camp Wonder has been for them both. Learn all about the Leap of Faith tower, and see firsthand how Camp Wonder changes lives.

Children with skin diseases don’t get to experience childhood in the same way as children without skin diseases. In this Community Spotlight, we sit down with Francesca Tenconi, the founder and executive director of the Children’s Skin Disease Foundation to talk about their program Camp Wonder! Camp Wonder is a place where children get to be kids, without the burden of their disease taking center stage. Camp Wonder’s unique approach allows children to put their childhood first and gives their parents and siblings a much-needed rest from doctor’s appointments, sleepless nights, and all the other burdens that come with skin disease. Learn more about CSDF here. This episode originally aired in February 2022.

Episode Three: Dr. Ramien moderates a 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 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.

Episode Two: The Case for Stevens-Johnson Syndrome (SJS)Dr. Yvonne Chiu discusses the confusion it can create when RIME is called out as a separate condition from SJS. 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.

Episode One: The Case for RIMEDr. Erin Mathes discusses her clinical approach to RIME patients and highlights the reasons for keeping RIME as its own, independent condition. 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.

Yakir Levin, MD, PhD is a Physician Scientist and Dermatologist at Massachusetts General Hospital, Instructor in Dermatology at Harvard Medical School, and an Investigator at the Wellman Center for Photomedicine. Watch to learn more about Dr. Levin’s interest in both medicine and electrical engineering and how he takes an interdisciplinary approach to bring the best possible care to his patients and their families.

PeDRA's Associate Director of Educational Programs had a chance to meet with several ISID attendees to get their take on the amazing science being presented at the inaugural International Societies for Investigative Dermatology meeting in Tokyo, Japan this last month. If you'd like to watch the video versions of these interviews, please click here.

Listen as PeDRA's Associate Director of Educational Programs, Jenn Dawson interviews several poster presenters at the ISID meeting in May 2023 in Tokyo, Japan. The interviews include a reference to an EB/Squamous Cell Carcinoma clinical trial. You can find more information about that trial here. You can also view the on-camera interviews referenced in this episode here.

Cathryn Sibbald, MD, MSc is a dermatologist at the Hospital for Sick Children (SickKids) in Toronto, Canada. In addition to treating children, Dr. Sibbald also treats adults in community hospitals, providing her with the unique opportunity to continue caring for many patients that she treated as children. She is the co-chair of PeDRA’s Hair Disorders Focused Study Group and serves on both the PeDRA Grants and PeDRA Outcomes Committees. Listen now to learn more about Dr. Sibbald’s work, how she originally wanted to be a pharmacist before pursuing dermatology, and how she became a pet-parent during the pandemic.

Learn about maximizing relationships between attendings and trainees. Dawn Eichenfield, MD, PhD, Cheryl Bayart, MD, and A. Yasmine Kirkorian, MD along with their trainees share their wisdom in this round table discussion about creating a research relationship that’s mutually beneficial for both attendings and trainees.

This webinar offers presentations from Nanette Silverberg, MD, and Adelaide Hebert, MD to discuss the renewed interest in understanding the pathophysiology of molluscum and the importance of treatment versus a “watch and wait” strategy. Implications on patient quality of life and burden of illness are also discussed as well as managing difficult molluscum cases. Emerging therapeutic strategies are also reviewed.This program is sponsored by Novan. Click here to view the presentation slides.

Irene Lara-Corrales, MD is an associate professor of dermatology at the University of Toronto and a pediatric dermatologist at The Hospital for Sick Children (SickKids) in Toronto, Canada. She always knew she wanted to be a pediatric dermatologist, and her interest in epidermolysis bullosa (EB) grew deeper after treating a young baby with EB during her residency in Costa Rica. Most recently, she’s been championing Hidradenitis Suppurativa within PeDRA and the greater pediatric dermatology research community. Watch or listen to learn more about her passions, including her love of books and tea.

Maria Teresa García-Romero, MD, MPH is an attending physician and assistant professor at the National Institute of Pediatrics in Mexico. She currently serves on PeDRA’s Grants Committee and is a former member of the Early Investigator Committee. Her research interests include morphea, vascular anomalies, EB, and more. Listen to hear about her multi-country research collaborations and advice for international clinician scientists.

Listen to Dr. Harper Price and Dr. Lee Zane discuss Dr. Zane's unique experience in academic research as well as pharma. Dr. Zane shares his insights on everything from the keys to designing a good clinical trial to forming research questions that are valuable to achieving both clinical and industry regulatory goals.

Dr. Jennifer Schoch presents her recent collaborative study on Skin Microbiome Sampling in the Preterm Neonate.