Project: Changes in the Socio-economic Burden of Epidermolysis Bullosa in Europe
| Acronym | BUR-EB (Reference Number: EJPRD21-042) |
| Project Topic | Epidermolysis Bullosa (EB) is a rare genetic skin disorder with no cure that places an enormous social and economic burden on patients and their families. Studies on this burden are scarce. This proposal (BUR-EB) aims to estimate the socio-economic burden of EB in 6 EU countries (Spain, France, Germany, Italy, Hungary and Bulgaria), and to compare it to data collected 10 years ago in the BURQOL-RD project. Data related to the impact of EB on every-day life will be collected from affected persons and their caregivers via an anonymous survey in collaboration with clinicians and patient organizations (DEBRA). The economic burden will take into account costs of healthcare and informal care, financial burden for families and productivity losses. Quality of life and family burden will be also measured. Besides, affected persons will co-create a map of their trajectories of care and needs. Based on this, information materials will be developed to help patients and their families cope better with the illness. BUR-EB offers an opportunity to observe how the social and economic impact of EB has changed over the last decade and how these changes could be related to the health and social policies implemented during that period. The project will provide tools that could be used in clinical studies of novel therapeutic options, health policies or interventions. BUR-EB is backed up by a balanced multidisciplinary group of internationally recognized clinical dermatologists, health economists, qualitative research experts, biostatisticians and representatives from patient organizations. |
| Network | EJP RD |
| Call | 3rd EJP RD Joint Transnational Call for Rare Diseases Research Project (JTC 2021) |
Project partner
| Number | Name | Role | Country |
|---|---|---|---|
| 1 | Fundación Canaria Instituto de Investigación Sanitaria de Canarias (FIISC) | Coordinator | Spain |
| 2 | Instituto de Investigación de Enfermedades Raras | Partner | Spain |
| 3 | Necker Enfants Malades Hospital | Partner | France |
| 4 | Ospedale Pediatrico Bambino Gesù | Partner | Italy |
| 5 | Universitätsklinikum Freiburg | Partner | Germany |
| 6 | Health Economics Research Center | Partner | Hungary |
| 7 | DEBRA International, globales Epidermolysis bullosa Selbsthilfe-Netzwerk | Partner | Austria |
| 8 | Asociación DEBRA-Piel de Mariposa | Observer | Spain |
| 9 | Interessengemeinscha ft Epidermolysis Bullosa e. V., DEBRA Deutschland | Observer | Germany |
| 10 | DEBRA FRANCE C/O | Observer | France |
| 11 | Associazione Debra Italia Onlus | Observer | Italy |
| 12 | DEBRA Hungary | Observer | Hungary |
| 13 | Bulgarian Association for Promotion of Education and Science (BAPES) | Observer | Hungary |