University of Minnesota
Jillian Rork, MD
Patients with Down syndrome (DS) experience skin conditions more frequently and earlier in life than the average person. By young adulthood, 56% of patients with DS have been diagnosed with a skin condition. Despite this high rate, the impact skin conditions have on the lives of patients with DS has not been explored. Our study aims to address this problem by capturing how various skin conditions affect the overall quality of life of people with DS and their families. To achieve this goal, we will survey patients with DS and skin conditions regarding the impact their skin conditions have on relationships, hobbies, and daily life. Caregivers will be invited to fill out a family version of the survey. Our results will enhance provider, caretaker, and community understanding of the experience of patients with DS who have skin conditions and provide insight on how to improve their dermatologic care.
This project was funded through a 2023 PeDRA Emerging Investigator Research Grant.