Search Results - "ABAITUA, I."

The view of experts on initiatives to be undertaken to promote equity in the access to orphan drugs and specialised care for rare diseases in Spain: A Delphi consensus by Torrent-Farnell, J., Comellas, M., Poveda, J.L., Abaitua, I., Gutiérrez-Solana, L.G., Pérez-López, J., Cruz, J., Urcelay, J., Lizán, L.

“…•The most feasible actions were related to OD access, referral medical teams and RD registries.•Review of OD price and reimbursement based on clinical and…”
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Identifying data sources for a national population-based registry: the experience of the Spanish Rare Diseases Registry by Zoni, A.C, Domínguez Berjón, M.F, Barceló, E, Esteban Vasallo, M.D, Abaitua, I, Jiménez Villa, J, Margolles Martins, M, Navarro, C, Posada, M, Ramos Aceitero, J.M, Vázquez Santos, C, Zurriaga Llorens, O, Astray Mochales, J

“…Highlights • Population-based disease registries are key instruments for rare diseases (RD) research. • The Spain Rare Disease Registry (Spain-RDR) is an…”
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National Rare Disease Registries: overview from Spain by de la Paz, M Posada, Alonso, V, Zurriaga, O, Astray, J, Aldana-Espinal, JM, Margolles, MJ, Jimñnez, J, Palomar, JA, Santana, M, Ramalle-Gomarra, E, Ramos, JM, Arribas, FE, Ãlamo, R, Gutiñrrez-Ãvila, G, Galmñs, A, Ribes, M García, Navarro, C, Errezola, M, Ardanaz, ME, Almansa, A, Garcia-Primo, P, Carroquino, MJ, Abaitua, I

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Prevalence of dystrophic epidermolysis bullosa in Spain: a population-based study using the 3-source capture-recapture method. Evidence of a need for improvement in care by Hernandez-Martín, A, Aranegui, B, Escámez, M J, de Lucas, R, Vicente, A, Rodríguez-Díaz, E, Bernabeu-Wittel, J, Gonzalez-Hermosa, R, García-Patos, V, Ginarte, M, Mascaró, Jr, J M, Corredera, C, Baselga, E, Santiago, J L, Chaves, A, Román, C, Evole, M, Martin-Santiago, A, Torrelo, A, Del Río, M, Feito, M, Gonzalez-Enseñat, M A, Romero, G, Morcillo-Makow, E, Abaitua, I, García-Doval, I

“…Dystrophic epidermolysis bullosa (DEB) is a rare disease that represents a heavy burden for both the patient and the health care system. There are currently no…”
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Childhood vasculitis hospitalizations in Spain, 1997-2011 by Villaverde-Hueso, A, Alonso, V, Morales-Piga, A, Hens-Pérez, M, Abaitua, I, Posada-de-la-Paz, M

“…The aim of this study is to describe the childhood vasculitis hospital burden in Spain (1997-2011), considering type of disease, hospitalization rates and time…”
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Public health research on rare diseases by Alonso, V, Villaverde-Hueso, A, Hens, M, Morales-Piga, A, Abaitua, I, Posada de la Paz, M

“…Despite the low prevalence of Rare Diseases (RD), over 30 million EU citizens suffer from these conditions. This paper summarizes some aspects of these…”
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Prevalence of Dystrophic Epidermolysis Bullosa in Spain: A Population-Based Study Using the 3-Source Capture–Recapture Method. Evidence of a Need for Improvement in Care by Hernandez-Martín, A, Aranegui, B, Escámez, M.J, de Lucas, R, Vicente, A, Rodríguez-Díaz, E, Bernabeu-Wittel, J, Gonzalez-Hermosa, R, García-Patos, V, Ginarte, M, Mascaró, J.M, Corredera, C, Baselga, E, Santiago, J.L, Chaves, A, Román, C, Évole, M, Martin-Santiago, A, Torrelo, A, del Río, M, Feito, M, Gonzalez-Enseñat, M.A, Romero, G, Morcillo-Makow, E, Abaitua, I, García-Doval, I

“…Abstract Background Dystrophic epidermolysis bullosa (DEB) is a rare disease that represents a heavy burden for both the patient and the health care system…”
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Reference centers for epidermolysis bullosa and ichthyosis: an urgent need in spain by Hernández-Martin, A, de Lucas, R, Vicente, A, Baselga, E, Morcillo-Makow, E, Arroyo Manzanal, M.I, Abaitua, I, Torrelo, A

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RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases by Taruscio, D, Morciano, C, Laricchiuta, P, Mincarone, P, Palazzo, F, Leo, CG, Sabina, S, Guarino, R, Auld, J, Sejersen, T, Gavhed, D, Ritchie, K, Hilton-Boon, M, Manson, J, Kanavos, PG, Tordrup, D, Tzouma, V, Le Cam, Y, Senecat, J, Filippini, G, Minozzi, S, Del Giovane, C, Schünemann, H, Meerpohl, JJ, Prediger, B, Schell, L, Stefanov, R, Iskrov, G, Miteva-Katrandzhieva, T, Serrano-Aguilar, P, Perestelo-Perez, L, Trujillo-Martín, MM, Pñrez-Ramos, J, Rivero-Santana, A, Brand, A, van Kranen, H, Bushby, K, Atalaia, A, Ramet, J, Siderius, L, Posada, M, Abaitua-Borda, I, Ferreira, V Alonso, Hens-Pñrez, M, Manzanares, FJ

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Toxic oil syndrome: Traceback of the toxic, oil and evidence for a point source epidemic by Posada de la Paz, M., Philen, R.M., Abaitua Borda, I., Sicilia Socias, J.M., Gómez de la Cámara, A., Kilbourne, E.M.

“…Rapeseed oil denatured with aniline was the vehicle of the causal agent of the toxic oil syndrome (TOS) epidemic that occurred in Spain in 1981. Although the…”
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Late Deaths among Young Women Affected by the Toxic Oil Syndrome in Spain by de la Paz, Manuel Posada, Abaitua, Ignacio, Terracini, Benedetto, Giménez, Olga, Sánchez-Porro, Pilar, Gómez-Mera, Carmen

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Pentachlorophenol and pentachloroanisole in oil samples associated with the toxic oil syndrome by Guitart, R. (Universitat Autonoma de Barcelona, Bellaterra, Spain.), Norgaard, L, Abaitua Borda, I, Posada de la Paz, M, Abian, J, Gelpi, E

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PSY116 - Experts Consensus on The Future of Rare Diseases Care and Orphan Drugs Access In Spain: A Delphi Study by Paz, S, Torrent, J, Poveda, JL, Perez, J, Moreno, JL, Martin, A, Gonzalez, L, Cruz, J, Comellas, M, Abaitua, I, Urcelay, J

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Experts consensus on actions for enhancing healthcare and access to orphan drugs in Spain by Abaitua, I, Comellas, M, Cruz, J, González, L, Martín, A, Moreno, JL, Pérez, J, Poveda, J, Paz, S, Torrent, J, Urcelay, J

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Experts Consensus on The Future of Rare Diseases Care and Orphan Drugs Access In Spain: A Delphi Study by Paz, S, Torrent, J, Poveda, JL, Perez, J, Moreno, JL, Martin, A, Gonzalez, L, Cruz, J, Comellas, M, Abaitua, I, Urcelay, J

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Toxic oil syndrome: Survival in the whole cohort between 1981 and 1995 by Valadés, P.Sánchez-Porro, Paz, M.Posada de la, Copa, P.de Andrés, Ribota, O.Gimenez, Borda, I.Abaitua

“…Background and Objective: In 1981, toxic oil syndrome (TOS) appeared in Spain, affecting more than 20,000 persons and causing over 2500 deaths to date…”
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Revisión de los aspectos éticos en la investigación biomédica: la experiencia del Comité de Ética del Centro de Investigación sobre el Síndrome del Aceite Tóxico y Enfermedades Raras (CISATER) by Martín-Arribas, M.C., Posada, M., Terracini, B., Carballo, F., Abaitua, I.

“…El objetivo de este artículo es dar a conocer las decisiones tomadas por el Comité de Ética del Instituto de Salud Carlos III para el Síndrome del Aceite…”
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Comparative cost-effectiveness analysis of oral triptan therapy for migraine in four European countries by Hens, Manuel, Villaverde-Hueso, Ana, Alonso, Veronica, Abaitua, Ignacio, de la Paz, Manuel Posada

“…Aim To assess the differences in the cost-effectiveness of oral triptan therapy for migraines among European countries. Methods A cost-effectiveness analysis…”
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Participation of eosinophils in the toxic oil syndrome by TEN, R. M., KEPHART, G. M., POSADA, M., ABAITUA, I., SOLDEVILLA, L., KILBOURNE, E. M., DUNNETTE, S. L., GLEICH, G. J.

“…SUMMARY The participation of eosinophils in the Spanish toxic oil syndrome (TOS) was investigated. Eosinophil infiltration and degranulation in tissues from 52…”
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The association of oil ingestion with toxic oil syndrome in two convents by Diaz de Rojas, F, Castro García, M, Abaitua Borda, I, Alonso Gordo, J M, Posada de la Paz, M, Kilbourne, E M, Tabuenca Oliver, J M

“…The authors studied the pattern of occurrence of toxic oil syndrome, a previously undescribed disease that occurred in Spain in epidemic form in 1981, in two…”
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