Prioritization of Therapy Uncertainties in Congenital Ichthyosis: Results from a Priority Setting Partnership

The study aimed to identify and prioritize therapeutic uncertainties in congenital ichthyosis through a Priority Setting Partnership involving 107 participants, including patients, caregivers, and healthcare professionals. They initially gathered 943 uncertainties, which were refined to 68. A final workshop with 13 participants established a top 10 list of research priorities, focusing on long-term side effects of oral retinoids, the best topical keratolytic agents, and treatments for itch and alopecia. The study emphasized the need for research that aligns with the concerns of those affected by ichthyosis.