{"database":"biostudies-literature","file_versions":[],"scores":null,"additional":{"omics_type":["Unknown"],"volume":["20(1)"],"submitter":["Naik H"],"pubmed_abstract":["<h4>Background</h4>Erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) are rare disorders that can negatively affect one's health-related quality of life (HRQoL) because of pain from phototoxic reactions and the avoidance of sun exposure that is recommended. There is a need for reliable and valid patient-reported outcome measures (PROMs) that address all aspects of EPP/XLP, including symptoms and impacts. Our objective was to assess 2 recently developed PROMs, the Sunlight Exposure Diary and the EPP Impact Questionnaire (EPIQ), to determine their factor structure and explore their psychometric properties.<h4>Results</h4>During a clinical trial conducted from January 2023 to August 2024 evaluating an oral therapy to improve sunlight tolerance in adults, participants with E"],"journal":["Orphanet journal of rare diseases"],"pagination":["492"],"full_dataset_link":["https://www.ebi.ac.uk/biostudies/studies/S-EPMC12486579"],"repository":["biostudies-literature"],"pubmed_title":["Validation of the sunlight exposure diary and the erythropoietic protoporphyria impact questionnaire (EPIQ)."],"pmcid":["PMC12486579"],"pubmed_authors":["Mathias SD","Colwell HH","Turner MP","O'Grady M","Chin M","Norregaard C","Naik H","Savage W"],"additional_accession":[]},"is_claimable":false,"name":"Validation of the sunlight exposure diary and the erythropoietic protoporphyria impact questionnaire (EPIQ).","description":"<h4>Background</h4>Erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) are rare disorders that can negatively affect one's health-related quality of life (HRQoL) because of pain from phototoxic reactions and the avoidance of sun exposure that is recommended. There is a need for reliable and valid patient-reported outcome measures (PROMs) that address all aspects of EPP/XLP, including symptoms and impacts. Our objective was to assess 2 recently developed PROMs, the Sunlight Exposure Diary and the EPP Impact Questionnaire (EPIQ), to determine their factor structure and explore their psychometric properties.<h4>Results</h4>During a clinical trial conducted from January 2023 to August 2024 evaluating an oral therapy to improve sunlight tolerance in adults, participants with E","dates":{"release":"2025-01-01T00:00:00Z","publication":"2025 Sep","modification":"2026-06-04T01:48:36.542Z","creation":"2026-05-04T03:13:56.923Z"},"accession":"S-EPMC12486579","cross_references":{"pubmed":["41029769"],"doi":["10.1186/s13023-025-04012-8"]}}