Prospective observational pilot study of quantitative light dosimetry in erythropoietic protoporphyria - 14/04/23
Doi : 10.1016/j.jaad.2022.11.036
Amy K. Dickey, MD a, b, c, ⁎ 
, Lina Rebeiz, BA a, Haya Raef, MD a, d, Rebecca K. Leaf, MD a, b, Sarina Elmariah, MD, PhD, MPH b, d, Hetanshi Naik, PhD e, Karl Anderson, MD f, Jared Conley, MD, PhD, MPH b, c, g, Christiana Iyasere, MD a, b, Sophia Zhao, MD, PhD h, Judith S. Birkenfeld, PhD i, j, Teresa Arroyo-Gallego, PhD j, k, Kristen Wheeden, MBA l, Sarah Ducamp, PhD m, David C. Christiani, MD, MPH a, b, Mark D. Fleming, MD, DPhil m, Irene Kochevar, PhD b, d
, Lina Rebeiz, BA a, Haya Raef, MD a, d, Rebecca K. Leaf, MD a, b, Sarina Elmariah, MD, PhD, MPH b, d, Hetanshi Naik, PhD e, Karl Anderson, MD f, Jared Conley, MD, PhD, MPH b, c, g, Christiana Iyasere, MD a, b, Sophia Zhao, MD, PhD h, Judith S. Birkenfeld, PhD i, j, Teresa Arroyo-Gallego, PhD j, k, Kristen Wheeden, MBA l, Sarah Ducamp, PhD m, David C. Christiani, MD, MPH a, b, Mark D. Fleming, MD, DPhil m, Irene Kochevar, PhD b, d a Department of Medicine, Massachusetts General Hospital, Boston, Massachusetts
b Harvard Medical School, Boston, Massachusetts
c Healthcare Transformation Lab, Massachusetts General Hospital, Boston, Massachusetts
d Department of Dermatology, Massachusetts General Hospital, Boston, Massachusetts
e Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai, New York, New York
f Department of Internal Medicine, Division of Gastroenterology and Hepatology, University of Texas Medical Branch, Galveston, Texas
g Department of Emergency Medicine, Massachusetts General Hospital, Boston, Massachusetts
h Analytica Now, Brookline, Massachusetts
i Instituto de Óptica "Daza de Valdés", Consejo Superior de Investigaciones Científicas, Madrid, Spain
j MIT linQ, Institute for Medical Engineering and Science, Massachusetts Institute of Technology, Cambridge, Massachusetts
k nQ Medical, Cambridge, Massachusetts
l United Porphyrias Association, Bethesda, Maryland
m Department of Pathology, Boston Children's Hospital, Boston, Massachusetts
∗Correspondence to: Amy K. Dickey, MD, Department of Medicine, Massachusetts General Hospital, 55 Fruit St Bulfinch 148, Boston, MA 02114Department of MedicineMassachusetts General Hospital55 Fruit St Bulfinch 148BostonMA02114
Key words : EPP, erythropoietic protoporphyria, light dose, light dosimetry, light sensitivity, light tolerance, porphyria, protoporphyria, x-linked protoporphyria
| Funding sources: This work was completed through funding from an MGH Medicine Innovation Program Spark Innovation Award and support from the MGH Healthcare Transformation Laboratory and Harvard Catalyst. Harvard Catalyst is supported by the Harvard Clinical and Translational Science Center (National Center for Advancing Translational Sciences, National Institutes of Health award UL1TR002541) and Harvard University and its affiliated academic health care centers. Dr Dickey received funding from a NIH NIAMS K23 grant 1K23AR079586-01. |
|
| IRB approval status: The Mass General Brigham HealthCare Institutional Review Board approved this study. |
|
| Patient consent: All participants provided written consent for publication. |
|
| Reprints not available from the authors. |
© 2022
American Academy of Dermatology, Inc.. Publié par Elsevier Masson SAS. Tous droits réservés.
Vol 88 - N° 5
P. 1148-1151 - mai 2023 Retour au numéro
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