Hidradenitis suppurativa (HS) is a devastating chronic inflammatory disease that manifests as recurrent painful nodules under the skin in the intertriginous areas of the body. It is associated with significant impacts on quality of life, psychosocial well-being, and long-term health outcomes of patients as well as consequences for families and caregivers. HS is prevalent, affecting between 1 and 4% of the population, and affects most patients in the prime of their life while also impacting many children. Despite the impact of HS, it remains underdiagnosed, undertreated, and understudied particularly in the pediatric and adolescent populations. Contributing to this dynamic are unknowns related to a complex disease etiology, stigma associated with HS symptoms (e.g., sweating, itching, and scarring commonly in the genital region), and limited treatment options to date with even fewer available for children under the age of 12.
Promisingly, there has been a recent surge of activity around HS and there is an evolving pipeline of emerging treatments. However, much of the focus of HS research and therapy development is on the adult population, with a gap remaining to address the needs of children, adolescents, and individuals transitioning from adolescence to adulthood. Yet the burden on these vulnerable populations is severe, the gravity of decisions regarding long-term disease progression and management significant, and the consequences of psychological and social impairment devastating.
To address these needs, the Pediatric Dermatology Research Alliance (PeDRA) is offering the 2023 Hidradenitis Suppurativa Pilot Grant with the aim of improving the quality of care and long-term health outcomes for HS patients for whom disease onset occurs before adulthood.
Focus
Proposals should address research questions relevant to the transition of care for patients transitioning from adolescence to adulthood. Proposals may be submitted by a single principal investigator or team of investigators, as they seek to build and sustain a larger-scale research program within this critical field of study. Areas of interest within the primary focus include, but are not limited to:
- Understanding healthcare needs and overcoming challenges faced by HS patients during the transition from adolescence to adulthood.
- Understanding the social, psychological, and physical factors influencing the transition of care for HS patients and their impact on the overall patient experience and health outcomes.
- Understanding the use of biologics in adolescent patients transitioning to adulthood.
Projects may be conducted in the areas of basic science, translational research, clinical research, epidemiology, technology, or other areas related to transition to care. Priority consideration will be given to projects led by early-to-mid-career principal investigators who are part of multidisciplinary teams including researchers, clinicians, and patient stakeholders. Additional priority will be given to applications that support PeDRA’s commitment to advancing equity, diversity, and inclusion and those that demonstrate a plan to leverage outcomes to form the basis for larger-scale future projects.
Important Details
- Up to $25,000 to support one year of research
- One award anticipated for this funding cycle
- Earliest project start date: April 1, 2024
- Application deadline: Thursday, December 7, 2023
Special thanks to UCB for support of the 2023 HS Pilot Grant.
Previous HS Pilot Grant Recipients
Colleen Cotton, MD
2023 HS Pilot Grant
Children’s National Hospital
Shared Journeys: A Qualitative Exploration of Patient and Parent Perspectives on the Transition to Adult Care in Hidradenitis Suppurativa
Read More…