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Observational pilot study of multi‐wavelength wearable light dosimetry for erythropoietic protoporphyria

Year: 2024
Type: article
Study design: Observational Study
Abstract: BACKGROUND: Erythropoietic protoporphyria (EPP) causes painful light sensitivity, limiting quality of life. Our objective was to develop and validate a wearable light exposure device and correlate measurements with light sensitivity in EPP to predict and prevent symptoms. METHODS: A wearable light dosimeter was developed to capture light doses of UVA, blue, and red wavelengths. A prospective observational pilot study was performed in which five EPP patients wore two light dosimeters for 3 weeks, one as a watch, and one as a shirt clip. RESULTS: Standard deviation (SD) increases from the mean in the daily blue light dose increased the odds ratio (OR) for symptom risk more than the self-reported outdoor time (OR 2.76 vs. 2.38) or other wavelengths, and a one SD increase from the mean in the daily blue light wristband device dose increased the OR for symptom risk more than the daily blue light shirt clip (OR 2.45 vs. 1.62). The area under the receiver operator curve for the blue light wristband dose was 0.78, suggesting 78% predictive accuracy. CONCLUSION: These data demonstrate that wearable blue light dosimetry worn as a wristband is a promising method for measuring light exposure and predicting and preventing symptoms in EPP.
DOI: 10.1111/ijd.17166
Authors: Amy K. Dickey, Jaime Berkovich, Rebecca K. Leaf, Paul Y. Jiang, Gisela Lopez‐Galmiche, Lina Rebeiz, Kristen Wheeden, Irene Kochevar, William Savage, Sophia Zhao, Elizabeth Campisi, Seung Y. Heo, Jacob Trueb, Ethan P. M. LaRochelle, John Rogers, Anthony Banks, Jan‐Kai Chang
Institutions: Harvard University, Massachusetts General Hospital, Northwestern University, American Gastroenterological Association, American Podiatric Medical Association, Genetics Society of America, Office of Disease Prevention, Disc Medicine, Inc. (United States)
Language: English
Open Access status: green
Funders: Alnylam Pharmaceuticals, Rare Diseases Clinical Research Network, Mitsubishi Tanabe Pharma Corporation, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institute of Biomedical Imaging and Bioengineering, National Center for Advancing Translational Sciences
OpenAlex ID: W4394720099
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Cites: 29
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Related to: 10