Project Title: Changes in the socio-economic burden of epidermolysis bullosa in Europe (BUR-EB)
Funded by: European Joint Programme on Rare Diseases (EJPRD), Instituto de Salud Carlos III (AC21_2/00011)
Grant awarded: €186,340 (SESCS/FIISC 2022)
Duration: 3 years (03/01/2022 – 02/28/2025)
Participating Partners: 8 partners and 6 patient associations from 6 EU countries (Spain, France, Germany, Italy, Hungary, and Bulgaria); Fundación Canaria Instituto de Investigación Sanitaria de Canarias (FIISC); Instituto de Investigación de Enfermedades Raras, Instituto de Salud Carlos III (IIER); Necker Enfants Malades Hospital (NEMH), France; Ospedale Pediatrico Bambino Gesù (OPBG), Italy; Universitätsklinikum Freiburg (UKF), Germany; Óbuda University, Health Economics Research Center (HECON), Hungary; Bulgarian Association for Promotion of Education and Science (BAPES), Bulgaria; DEBRA International; DEBRA-Piel de Mariposa, Spain; Interessengemeinschaft Epidermolysis Bullosa e. V., DEBRA Deutschland, Germany; DEBRA France, France; Associazione Debra Italia Onlus, Italy; DEBRA Hungary, Hungary.
Principal Investigator: Renata Linertová
Researchers at SCS/FIISC: Lidia García Pérez, Cristina Valcárcel Nazco, Ana Toledo Chávarri, Alezandra Torres Castaño, Carmen Guirado Fuentes, Aránzazu Hernández Yumar, Yolanda Ramallo Fariña
Project Summary
Epidermolysis bullosa (EB) is a rare genetic skin disorder with no cure, causing a significant social and economic burden on patients and their families. Studies on its impact are scarce. This project (BUR-EB) aims to estimate the socio-economic burden of EB in 6 EU countries (Spain, France, Germany, Italy, Hungary, and Bulgaria) and compare it with data collected 10 years ago in the BURQOL-RD project.
Data related to the impact of EB on daily life will be collected from affected individuals and their caregivers through an anonymous survey in collaboration with physicians and patient organizations (DEBRA). The economic burden will take into account healthcare costs, informal care, the financial strain on families, and productivity losses. Quality of life and family burden will also be measured. Additionally, affected individuals will co-create a map of their care pathways and needs. Based on this, informational materials will be developed to help patients and families better cope with the disease.
BUR-EB offers an opportunity to observe how the social and economic impact of EB has changed over the past decade and how these changes may be related to the social and healthcare policies implemented during this period. The project will provide tools that could be used in clinical studies with new therapeutic options, health policies, or interventions. BUR-EB is supported by a balanced multidisciplinary team of clinical dermatologists, health economists, qualitative research experts, biostatisticians, and internationally recognized patient organization representatives.
Contact Person: Renata Linertová (renata.linertova@sescs.es)
Website with project information: www.bur-eb.com