Annual Report 2019
Dear Colleagues,
When PeDRA was formed, in 2012, Society for Pediatric Dermatology (SPD) members came together with a shared realization that more research needed to be done for children with skin disease and their families. More research, and more research faster. Early members of PeDRA mobilized around a mission to facilitate collaborative research in a field where research was lacking, and a vision to establish a sustainable research network.
The PeDRA that exists now has gone even beyond the dreams we had then. 2019 was a pivotal year that truly reflects the growth and diversity of PeDRA’s impact in the field of pediatric dermatology. It was a year when PeDRA supported more members than ever before, worked with more partners across industry and advocacy, gave more in support of research than ever before, and launched its first cross-disease “pan-PeDRA” study. In large part due to the size and scope of PeDRA’s activities, in 2019 the network established a refreshed identity with a new logo, new website and status as an independent nonprofit organization. These changes position PeDRA to serve a diverse group of stakeholders with interest in pediatric dermatology research, and to work alongside SPD as a partner, with each organization making the other stronger and both driving the field of forward.
Now fueled by the mission to create, inspire, and sustain research to prevent, treat, and cure childhood skin disease, PeDRA’s vision is changing lives and healing children with skin disease through collaboration and discovery. This summary of 2019’s activities, supporters, and milestones is a testament to PeDRA’s current strength and future potential.
As we write this statement, in April 2020, we are very mindful of the global pandemic of COVID-19, which has affected all of us both personally and professionally. While it may affect the pace that research happens at – at least temporarily – it has not dampened our enthusiasm for the mission and vision of PeDRA whatsoever. Indeed, research into delivery of care and telemedicine through PeDRA collaborations are likely to be an important result of the pandemic.
We hope that all of you stay safe and healthy in the coming months.
Thank you to our members, our partners, our supporters, and everyone with a shared interest in PeDRA’s mission and vision.
Sincerely,
Dawn Siegel, MD
Medical College of Wisconsin
PeDRA Co-President
Ilona Frieden, MD
University of California San Francisco
PeDRA Co-President
Inside the numbers
298 members
including 110 early career investigators, 73 trainees, and 62 researchers who counted 2019 as their first year of PeDRA membership
20 mentor-mentee relationships
kicked off for the 3rd PeDRA mentorship program cycle
12 PeDRA representatives
visited NIH and FDA for meetings, including partners from 3 patient advocacy organizations
“PeDRA connected me to all of these different mentors at all of these different institutions. Now as a brand new attending I’m able to go to those individuals and ask them research questions, career questions… which has then allowed me to act as a mentor to other residents and research fellows.”
—Colleen Cotton, MD
Inside the numbers
202 Attendees
at the 7th PeDRA Annual Conference in Chicago, sharing 59 posters, and participating in 8.5 hours of active workgroup time
112 Attendees
at the 4th annual Early Investigators Forum
26 patients, parents, and advocates
came together for the first-ever Patient Track at the PeDRA Annual Conference
“The PeDRA conference has helped to propel my research by providing a platform to become engaged through collaboration and mentorship”
—Esteban Fernandez Faith, MD
Investing in the Mission
$934,443 invested by PeDRA in mission-driven programs, activities, and infrastructure
$219,000 received from the Patient-Centered Outcomes Research Institute (PCORI) to build capacity for patient-centered outcomes research in pediatric dermatology
$219,000 received from the Patient-Centered Outcomes Research Institute (PCORI) to build capacity for patient-centered outcomes research in pediatric dermatology
$149,043 spent to support 15 studies, investigators, and high-priority initiatives across 5 different funding programs
5 Research Grants
providing up to $15,000 each to support early-stage research.
5 Study Support Grants
providing up to $4,000 each for statistical support for active PeDRA studies
2 Research Hot Seat Awards
providing $12,500 each to support early to mid-career investigators embarking on innovative research.
1 Consensus Grant
providing $22,500 to support a collaborative consensus building effort
1 Weston Career Development Award
providing $40,000 to support the career of an early career researcher, in collaboration with the Society for Pediatric Dermatology.
PeDRA Working Groups
2019 was a great year for PeDRA in many ways, but none greater than the continued progress of its five working groups who continue to advance research through active collaboration.
Inflammatory Skin Diseases
25 active studies, 9 cumulative publications
The Inflammatory Skin Disease working group remains PeDRA’s largest, and in 2019 brought its publication total to 9, including a high impact paper on the impact of pediatric alopecia on parent quality of life. It made progress on 25 collaborative projects focused on psoriasis, atopic dermatitis, connective tissue and auto-inflammatory disorders, acne, hidradenitis, and diseases affecting the hair and nails.
Birthmarks
10 active studies, 2 cumulative publications
In 2019, the Birthmarks working group published important work on adults with PHACE syndrome and made progress on 10 studies spanning vascular malformations, disorders of pigmentation, and ulcerated hemangiomas.
Genetic Skin Disorders
9 active studies, 1 cumulative publication
2019 saw the publication of a seminal publication on clinical events in patients with epidermolysis bullosa (EB) resulting from the Genetics working group’s EB subgroup, which doubles as the Epidermolysis Bullosa Clinical Research Consortium. Meaningful progress was made across this and 8 other studies striving to find answers for families coping with rare genetic skin conditions.
Skin Tumors and Reactions to Cancer Therapies (STARC)
6 active studies, 3 cumulative publications
The STARC working group continues to convert studies to publications at an impressive rate, with a 2019 publication in the Journal of Pediatrics on risk factors of outcomes of non-melanoma, pediatric skin cancer. A total of six studies continue to advance within the group.
Neonatal Skin
4 studies
Small but mighty, the neonatal skin group demonstrated PeDRA’s strength of collaboration in 2019 through support of its members and relationships forged with new partners. The Neonatal working group advanced studies on scarring in premature infants, skin care practices in the neonatal ICU, neonatal microbiome, and management of afebrile neonates with pustules.
Cross-Cutting Research
20 studies
PeDRA is demonstrated the strength and diversity of its community in 2019, by supporting studies that span each of its working groups to impact families coping with any pediatric skin disease.
Stigma “Big” Study:
In 2019, PeDRA aligned 2 industry partners, 7 patient advocacy groups, and 34 PeDRA investigator sites under the direction of PI Amy Paller, MD of Northwestern University to study the stigma and psychosocial burden of chronic pediatric skin diseases. With a budget of $548,000, enrollment goal of 3,500 patient-parent participants, and aggressive 16-month timeline, a study of this size could only happen with the support of a group like PeDRA. By the end of 2019, the “Big” study had enrolled 676 (or almost 20%) of its goal with the rate of enrollment rapidly rising and results expected by the end of 2020.
“The stigma study allows us, for the first time, to quantify the psychosocial impact of visible skin disorders on children.”
—Amy Paller, MD
Our Supporters
PeDRA is grateful to have received $958,548 in financial support in 2019 that it was able to use in support of mission-driven programs, activities, and infrastructure. Thanks to each of these organizations and individuals for their commitment to the PeDRA mission:
Corporate Council
Silver
Bronze
Partner
Annual Conference
Funding for the 2019 PeDRA Annual Conference was made possible (in part) by R13AR072496 from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). The views expressed in written conference materials or publications and by speakers and moderators do not necessarily reflect the official policies of the Department of Health and Human Services, nor does mention of trade names, commercial practices, or organizations imply endorsement by the US Government.
The 2019 PeDRA Annual Conference was funded in part through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (16347-PeDRA).
Stigma “Big” Study
Individuals
$1,000 +
- Yvonne Chiu, MD
- Jason Fried
- Ilona Frieden, MD
- Amy Paller, MD
- Sheila Rittenberg & Dan Fohrman
- Carroll and Nelson Rosenstein
- Michael Siegel, PhD
$500–$999
- Susan Boiko, MD
- Beth Drolet, MD
- Maria Garzon, MD
- Elaine Siegfried, MD
- Jeff Sugarman, MD, PhD
$200–$499
- Anna Bruckner, MD
- Keith Choate, MD, PhD
- Larry Eichenfield, MD
- Leslie Lawley, MD
- Dawn Siegel, MD
- Virginia Sybert, MD
- Megha Tollefson, MD
- Albert Yan, MD
$100–$199
- Leslie Castelo-Soccio, MD, PhD
- Jenn Dawson, In memory of Steve D’Ambrosia
- Elsie Ezomike, MD
- Sheilagh Maguiness, MD
- Danielle Marcoux, MD
- Ann Meara, MD
- Brent and Lynn Siegel
- Joan Tamburro, DO
- Joyce Teng, MD, PhD
Up to $99
- Colleen Cotton, MD
- Mercedes Gonzalez, MD
- Elena Hawryluk, MD, PhD
- David Roberts
We graciously thank the Society for Pediatric Dermatology (SPD) for its ongoing support of PeDRA, including an annual contribution of $25,000 to support Research Grants and $20,000 to support the Weston Career Development Award.
PeDRA Leadership
Board of Directors
Dawn Siegel, MD
CO-PRESIDENT
Medical College of Wisconsin
Ilona Frieden, MD
CO-PRESIDENT
University of California San Francisco
Leslie Lawley, MD
TREASURER
Emory University
Lisa Arkin, MD
University of Wisconsin
Anna Bruckner, MD
University of Colorado
Leslie Castelo-Soccio, MD, PhD
Children’s Hospital of Philadelphia
Yvonne Chiu, MD
Medical College of Wisconsin
Keith Choate, MD, PhD
Yale University
Beth Drolet, MD
University of Wisconsin
Larry Eichenfield, MD
University of California San Diego
Sheilagh Maguiness, MD
University of Minnesota
Elena Pope, MD
University of Toronto
Elaine Siegfried, MD
St. Louis University
Joyce Teng, MD, PhD
Stanford University
Megha Tollefson, MD
Mayo Clinic