Development and content validation of a sunlight exposure diary in patients with erythropoietic protoporphyria.
Susan D MathiasLaurie BurkeHilary H ColwellGeorge MensingWill SavageHetanshi NaikPublished in: Journal of patient-reported outcomes (2023)
Evaluating a new treatment for EPP requires accurately capturing time in sunlight and symptoms in this unique disorder. The newly developed sun exposure diary is content valid and can be used to assess important aspects of symptoms and daily life and therefore evaluate clinically meaningful therapeutic response.