How To Change A Specialty With Four [Not-So-Simple] Principles
Innovation, engagement, activism, and vision are 4 principles that the Pediatric Dermatology Research Alliance (PeDRA) employs to influence the field of pediatric dermatology and have a lasting impact. Read how the organization supports these philosophies in its structure, activities, priority setting, and more.
What Is PeDRA
In the February 2015 Voices article in The Dermatologist, we wrote that PeDRA has the potential to transform research in pediatric dermatology by enabling critical collaboration to address gaps in the understanding of skin disorders of childhood. In the 4 years since its inception in 2012 as the research arm of the Society for Pediatric Dermatology, PeDRA has made a noticeable impact on the level and quality of pediatric dermatology research. Soon the findings emerging from this work will reach patients in our clinics.
PeDRA has brought together many talented and dedicated individuals who are collectively studying rare and common pediatric disorders, and creating a shared research agenda for collaborative research on a national scale. PeDRA multiplies the power of investigators many-fold by linking them together in work that is targeted at an area of immense unmet need. Despite the unparalleled scientific advancements in cutaneous biology and new therapeutics that are emerging, there has been little discovery related to pediatric skin disorders, and few translations into new interventions. As we reviewed in our 2015 article, many of our therapies for pediatric skin disease are based on anecdotal evidence, expert opinion, and precedent established only in adults. There is a lack of accepted clinical guidelines for many pediatric dermatology conditions, including some that are truly life-threatening.
PeDRA Begins To Fill The Void
PeDRA has fostered 41 active studies across a broad spectrum of disease states under these categories: birthmarks, genetic skin disorders, inflammatory skin disorders, neonatal, and skin tumors and reactions to cancer therapies. Reflecting PeDRA’s core mission, each of the studies is a collaborative, multisite project. (For further details on PeDRA studies, please visit http://pedraresearch.org/research-areas) We engage 135 investigators from more than 65 institutions in the United States, Canada, and abroad. PeDRA communicates through its LISTSERV with 250 physician investigators, trainees, and other scientists, ensuring that the collaborative research message reaches a broad network of professionals.
PeDRA’s studies are spread across various stages of development, including projects that are theoretical, in active design, in data collection, in data analysis, and published or being prepared for publication. The studies include clinical projects, development of consensus guidelines for management of specific diseases, and genotype-phenotype studies. PeDRA projects also include basic science work, such as developing cell lines. In various disease areas, we have registries under the PeDRA umbrella, which track the course, complications, and clinical interventions of diseases and/or collect information including disease progression, surveillance, and interventions. This comprehensive registry work can lead to early diagnosis, interventions, and better outcomes of care.
Study efforts are also underway to establish a core set of data/parameters that should be recorded in pediatric patients receiving systemic therapies for specific disorders. Our investigators are also evaluating current classification systems and management strategies, in order to determine higher risk babies and children presenting with skin issues.
These early examples of ongoing PeDRA work promise to have far-reaching impacts in pediatric dermatologic care. How does one organization achieve this kind of impact?
Providing A Platform
The early establishment of an annual stand-alone research meeting was instrumental in moving PeDRA forward as a research collaborative network. This meeting provides a forum for discussions about research and brings together clinical researchers (pediatric dermatologists and other physicians with an interest in pediatric skin diseases), basic scientists, experts in research tools, and representatives from patient advocacy organizations. The meeting venue enables working groups to develop their research goals and clinical priorities face-to-face, while also providing a platform for ongoing study groups to meet and strategize. The multicenter research that is proposed and initiated ultimately translates research findings to the care of children.
Importantly, the Annual Conference facilitates mentoring of future generations of pediatric dermatology researchers and training of investigators in sound research methodology. As such, the meeting provides the infrastructure to critically review research protocols and data as projects develop and are implemented.
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