biostudies-literatureJeffs EDystrophic Epidermolysis Bullosa Research Association375https://www.ebi.ac.uk/biostudies/studies/S-EPMC11468479biostudies-literatureUnknown19(1)<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 painOrphanet journal of rare diseasesPain in recessive dystrophic epidermolysis bullosa (RDEB): findings of the Prospective Epidermolysis Bullosa Longitudinal Evaluation Study (PEBLES).PMC11468479Mellerio01McGrath JALedwaba-Chapman LRobertson SJBisquera AJeffs EMellerio JEPillay EIWang YMartinez AEfalsePain in recessive dystrophic epidermolysis bullosa (RDEB): findings of the Prospective Epidermolysis Bullosa Longitudinal Evaluation Study (PEBLES).<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 pain2024-01-01T00:00:00Z2024 Oct2025-04-18T13:24:54.898Z2025-04-06T23:04:42.673ZS-EPMC114684793939412910.1186/s13023-024-03349-w