{"database":"biostudies-literature","file_versions":[],"scores":null,"additional":{"submitter":["Jeffs E"],"funding":["Dystrophic Epidermolysis Bullosa Research Association"],"pagination":["375"],"full_dataset_link":["https://www.ebi.ac.uk/biostudies/studies/S-EPMC11468479"],"repository":["biostudies-literature"],"omics_type":["Unknown"],"volume":["19(1)"],"pubmed_abstract":["<h4>Background</h4>Pain is common in the genetic skin fragility disorder epidermolysis bullosa (EB), from skin and mucosal injury and inflammation as well as extra-mucocutaneous sites. Individuals living with EB have identified pain as a priority for better treatments.<h4>Objectives</h4>The Prospective EB Longitudinal Evaluation Study (PEBLES) is a prospective register study exploring the natural history of RDEB across all ages from birth to death. Here, we investigated the characteristics and treatment of pain in different RDEB subtypes.<h4>Methods</h4>Information was collected from individuals with different RDEB subtypes over an 8-year period. Data included visual analogue scale (VAS) ratings of background and procedural pain, its location, intensity and impact on sleep, as well as pain"],"journal":["Orphanet journal of rare diseases"],"pubmed_title":["Pain in recessive dystrophic epidermolysis bullosa (RDEB): findings of the Prospective Epidermolysis Bullosa Longitudinal Evaluation Study (PEBLES)."],"pmcid":["PMC11468479"],"funding_grant_id":["Mellerio01"],"pubmed_authors":["McGrath JA","Ledwaba-Chapman L","Robertson SJ","Bisquera A","Jeffs E","Mellerio JE","Pillay EI","Wang Y","Martinez AE"],"additional_accession":[]},"is_claimable":false,"name":"Pain in recessive dystrophic epidermolysis bullosa (RDEB): findings of the Prospective Epidermolysis Bullosa Longitudinal Evaluation Study (PEBLES).","description":"<h4>Background</h4>Pain is common in the genetic skin fragility disorder epidermolysis bullosa (EB), from skin and mucosal injury and inflammation as well as extra-mucocutaneous sites. Individuals living with EB have identified pain as a priority for better treatments.<h4>Objectives</h4>The Prospective EB Longitudinal Evaluation Study (PEBLES) is a prospective register study exploring the natural history of RDEB across all ages from birth to death. Here, we investigated the characteristics and treatment of pain in different RDEB subtypes.<h4>Methods</h4>Information was collected from individuals with different RDEB subtypes over an 8-year period. Data included visual analogue scale (VAS) ratings of background and procedural pain, its location, intensity and impact on sleep, as well as pain","dates":{"release":"2024-01-01T00:00:00Z","publication":"2024 Oct","modification":"2025-04-18T13:24:54.898Z","creation":"2025-04-06T23:04:42.673Z"},"accession":"S-EPMC11468479","cross_references":{"pubmed":["39394129"],"doi":["10.1186/s13023-024-03349-w"]}}