Although language disparities in outcomes are well documented in general pediatrics and adult oncology, little is known in pediatric oncology. Patient or family language is not included in many multi- institutional databases and patient registries, limiting studies of language-based inequities to single institutions. It is essential to identify specific disparities in outcomes to start building […]
Vitiligo is an acquired disorder of skin depigmentation present in roughly 1% of the population which can be psychologically devastating, particularly in children and patients with skin of color. It is an autoimmune disease of T-cell mediated melanocyte destruction that cannot be cured but can be managed to promote repigmentation. There have been few reports […]
The Rare-Epilepsy Network (REN.rti.org), funded by PCORI, was conceptualized and designed in 2014 by patient partners, researchers and clinicians with the objective of creating the largest registry of well-characterized individuals diagnosed with a rare epilepsy syndrome (e.g., West, Dravet, Lennox-Gastaut) or a syndrome/condition with a genetic basis that had epilepsy as a co-occurring condition in […]
Scaling up eating disorders prevention strategies for population-wide impact will require the field to adopt a new and concerted focus on policy translation research. Decades of research have been done to identify what works to prevent and treat eating disorders. However, there has been little to no investment in research seeking to identify which eating […]