RESULTS
RESULTS
PROJECT’S PUBLICATIONS
- Greta Arias-Merino, Juan Benito-Lozano, Renata Linertová, Verónica Alonso-Ferreira & on behalf the BUR-EB Study Group. Health-related quality-of-life evaluation in epidermolysis bullosa: a scoping review protocol BioMed Central Journal- Springer Nature
- Arias-Merino G, Benito-Lozano J, Gómez-Martínez M, Villaverde-Hueso A, Linertová R, Alonso-Ferreira V, BUR-EB Study Group. Health-Related Quality of Life evaluation in epidermolysis bullosa: a scoping review. British Journal of Dermatology.
- Greta Arias-Merino on behalf of the BUR-EB study group (Internal report). Epidermolysis Bullosa (EB) in Europe and the development in the last decade.
RELATED PUBLICATIONS
- El Hachem M, Diociaiuti A, Zambruno G, Samela T, Ferretti F, Carnevale C, Linertová R, Bodemer C, Murrell DF, Abeni D. “Quality of Life in Epidermolysis Bullosa” and “Epidermolysis Bullosa Burden of Disease”: Italian translation, cultural adaptation, and pilot testing of two disease-specific questionnaires. Ital J Pediatr. 2024 Apr 19
- Angelis A, Kanavos P, López-Bastida J, Linertová R, Oliva-Moreno J, Serrano-Aguilar P, Posada-de-la-Paz M, Taruscio D, Schieppati A, Iskrov G, Brodszky V, von der Schulenburg JMG, Chevreul K, Persson U, Fattore G. Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe. Eur J Health Econ. 2016;17. PMID: 27107597
- Dufresne H, Hadj-Rabia S, Bodemer C. Impact of a rare chronic genodermatosis on family daily life: the example of epidermolysis bullosa. Br J Dermatol. 2018;179(5):1177–1178. PMID: 29710387
- El Hachem M, Zambruno G, Bourdon-Lanoy E, Ciasulli A, Buisson C, Hadj-Rabia S, Diociaiuti A, Gouveia CF, Hernández-Martín A, de Lucas Laguna R, Dolenc-Voljč M, Tadini G, Salvatori G, De Ranieri C, Leclerc-Mercier S, Bodemer C. Multicentre consensus recommendations for skin care in inherited epidermolysis bullosa. Orphanet J Rare Dis. 2014;9(1):76. PMID: 24884811
- Has C, Bauer JW, Bodemer C, Bolling MC, Bruckner‐Tuderman L, Diem A, Fine J ‐, Heagerty A, Hovnanian A, Marinkovich MP, Martinez AE, McGrath JA, Moss C, Murrell DF, Palisson F, Schwieger‐Briel A, Sprecher E, Tamai K, Uitto J, Woodley DT, Zambruno G, Mellerio JE. Consensus reclassification of inherited epidermolysis bullosa and other disorders with skin fragility. Br J Dermatol. 2020 Oct;183(4):614–627. PMID: 32017015
- López-Bastida J, Oliva-Moreno J, Linertová R, Serrano-Aguilar P. Social/economic costs and health-related quality of life in patients with rare diseases in Europe. Eur J Health Econ. 2016;17. PMID: 27023708
- Tabolli S, Sampogna F, Di Pietro C, Paradisi A, Uras C, Zotti P, Castiglia D, Zambruno G, Abeni D. Quality of life in patients with epidermolysis bullosa. Br J Dermatol. 2009 Oct;161(4):869–877. PMID: 19624546