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Listar01.01. Investigación y comunicación científica por tema "Registries"

Listar01.01. Investigación y comunicación científica por tema "Registries"

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  • Analysis of the genotypic profile and its relationship with the clinical manifestations in people with cystic fibrosis: study from a rare disease registry 
    Rueda-Nieto, Senay; Mondéjar-López, Pedro; Mira-Escolano, María-Pilar; Cutillas-Tolin, Ana; Maceda-Roldán, Luis-Alberto; Arense-Gonzalo, Julián-J; Palomar-Rodríguez, Joaquín (BMC, 2022-06)
    BACKGROUND: Cystic fibrosis (CF) has a vast and heterogeneous mutational spectrum in Europe. This variability has also been described in Spain, and there are numerous studies linking CFTR variants with the symptoms of the ...
  • Changes in the epidemiology of kidney replacement therapy across Europe in 2020-the first year of the COVID-19 pandemic: an ERA Registry study 
    Kramer, Anneke; Jager, Kitty-J; Chesnaye, Nicholas-C; Kerschbaum, Julia; Hommel, Kristine; Comas-Farnes, Jordi; Trujillo-Alemán, Sara; Santamaria, Rafael; Finne, Patrik; Hemmelder, Marc; Asberg, Anders; Nitsch, Dorothea; Ambuhl, Patrice; Sorensen, Soren-S; Sánchez-Álvarez, JEmilio; Segelmark, Marten; Resic, Halima; Ots-Rosenberg, Mai; Radunovic, Danilo; Palsson, Runolfur; Santiuste-de-Pablos, Carmen; Rodríguez-Arévalo, Olga-Lucía; Legeai, Camille; Lausevic, Mirjana; Bakkaloglu, Sevcan-A; Ortiz, Alberto; Stel, Vianda-S (OXFORD UNIV PRESS, 2024-09)
    BACKGROUND: In 2020, the coronavirus disease 2019 (COVID-19) pandemic caused disruptions in kidney replacement therapy (KRT) services worldwide. The aim of this study was to assess the effect of the COVID-19 pandemic in ...
  • Damage in a large systemic lupus erythematosus cohort from the Spanish Society of Rheumatology Lupus Registry (RELESSER) with emphasis on the cardiovascular system: a longitudinal analysis 
    Altabas-González, Irene; Rua-Figueroa, Íñigo; Mourino, Coral; Roberts, Karen; Jiménez, Norman; Martínez-Barrio, Julia; Galindo, María; Calvo-Alen, Jaime; del-Campo-Pérez, Víctor; Uriarte-Itzazelaia, Esther; Tomero, Eva; Freire-González, Mercedes; Martínez-Taboada, Víctor; Salgado, Eva; Vela, Paloma; Fernández-Nebro, Antonio; Olive, Alejandro; Narvaez, Javier; Menor-Almagro, Raúl; Santos-Soler, Gregorio; Hernández-Beriain, José-Ángel; Manero, Javier; Aurrecoechea, Elena; Ibarguengoitia-Barrena, Oihane; Montilla, Carlos; Bonilla, Gema; Torrente-Segarra, Vicenc; Cacheda, Ana-Paula; García-Villanueva, María-Jesús; MoRiaño-Morales, Claudia; Fito-Manteca, Concepción; Lozano-Rivas, Nuria; Bohorquez, Cristina; Pego-Reigosa, José-María (BMJ PUBLISHING GROUP, 2024-08-03)
    OBJECTIVE: To assess organ damage, with emphasis on the cardiovascular system, over the different stages of the disease in a large SLE cohort. METHODS: Multicentre, longitudinal study of a cohort of 4219 patients with SLE ...
  • Estimating Country-Specific Incidence Rates of Rare Cancers: Comparative Performance Analysis of Modeling Approaches Using European Cancer Registry Data 
    Salmerón-Martínez, Diego; Botta, Laura; Martínez, José-Miguel; Trama, Annalisa; Gatta, Gemma; Borras, Josep-M; Capocaccia, Riccardo; Cleries, Ramón (OXFORD UNIV PRESS INC, 2022-03)
    Estimating incidence of rare cancers is challenging for exceptionally rare entities and in small populations. In a previous study, investigators in the Information Network on Rare Cancers (RARECARENet) provided Bayesian ...
  • Incidence and factors associated with disability and dependency in patients with Guillain-Barré syndrome in the Region of Murcia: Population study for the period 2009-2020 
    Rueda-Nieto, S; Mira-Escolano, María-Pilar; Sánchez-Escámez, Antonia; Cayuela-Fuentes, Juana-María; Maceda-Roldán, L-A; Ciller-Montoya, P; Palomar-Rodríguez, Joaquín (ELSEVIER ESPAÑA, 2025-10)
    BACKGROUND: The incidence of Guillain-Barré syndrome (GBS) is variable and is still unknown in our geographical area. Poor prognostic factors have been studied, but few have analysed those that influence long-term results. ...
  • Incidence and Trend of Type I and II Endometrial Cancer in Women from Two Population-Based European Cancer Registries (1998-2012) 
    Ángel-Rodríguez-Palacios, Daniel; Colorado-Yohar, Sandra-Milena; Velten, Michel; Vaamonde-Martin, Ricardo-J; Ballesta-Ruiz, Mónica; Chirlaque-López, María-Dolores (MDPI, 2022-04)
    Endometrial cancer (EC) is the most frequent female genital tract cancer in Europe. This cohort study aimed to determine age-standardised incidence rates and long-term trends of type I and II endometrial cancer in women ...
  • Incidence of myeloid neoplasms in Spain (2002-2013): a population-based study of the Spanish network of cancer registries 
    Solans, Marta; Sanvisens, Arantza; Ameijide, Alberto; Merino, Susana; Rojas, Dolores; Alemán, María-Araceli; Banqueri, Emilia; Chico, Matilde; Marcos, Ana-Isabel; de-Castro, Visitación; Gil, Leire; López-de-Munain, Arantza; Puigdemont, Montse; Sánchez, María-José; Perucha, Josefina; Ruiz-Armengol, Patricia; Chirlaque-López, María-Dolores; Guevara, Marcela; Carulla, María; Marcos-Gragera, Rafael (NATURE PORTFOLIO, 2022-01-10)
    Comprehensive population-based data on myeloid neoplasms (MNs) are limited, mainly because some subtypes were not recognized as hematological cancers prior to the WHO publication in 2001, and others are too rare to allow ...
  • Predictive factors of survival in people with Cystic fibrosis from a Spanish registry of rare diseases. 
    Rueda-Nieto, Senay; Mondéjar-López, Pedro; Mira-Escolano, María-Pilar; Cutillas-Tolín, Ana; Maceda-Roldán, Luis-Alberto; Arense-Gonzalo, Julián; Palomar-Rodríguez, Joaquín (MINISTERIO DE SANIDAD Y CONSUMO, )
    OBJECTIVE: In Spain, several studies describe the population with cystic fibrosis (CF) and analyze mortality trends, but few determine factors that influence survival. The objective of this study was to analyze survival ...
  • Sex and gender disparities in patients with advanced gastroesophageal adenocarcinoma: data from the AGAMENON-SEOM registry 
    Gallego-Plazas, J; Arias-Martínez, A; Lecumberri, A; Martínez-de-Castro, Eva; Custodio, A; Cano, JM; Hernández, R; Montes, AF; Macías, I; Pieras-López, A; Díez, M; Visa, Laura; Tocino, R; Martínez-Lago, Nieves; Limon, ML; Gil, M; Pimentel, P; Mangas, M; Granja, M; Carnicero, AM; Hernández-Pérez, C; González, LG; Jiménez-Fonseca, Paula; Carmona-Bayonas, Alberto (ELSEVIER, 2022-06)
    BACKGROUND: Recommendations for research articles include the use of the term sex when reporting biological factors and gender for identities or psychosocial or cultural factors. There is an increasing awareness of ...
  • Spanish Registry of Renal Patients: 2022 Report and evolutive analysis 
    Quiroga, Borja; Mahillo, Beatriz; Mazuecos, Auxiliadora; Ortiz, Alberto; Comas-Farnes, Jordi; Hernández-Marrero, Domingo; Trujillo-Alemán, Sara; Santiuste-de-Pablos, Carmen; Rodríguez-Arévalo, Olga-Lucía; Marqués-Vidas, María; Slon-Roblero, M-Fernanda; Artamendi-Larrañaga, Marta; Moina-Eguren, Íñigo; Valentín-Muñoz, María-de-la-Oliva; Rodríguez-Camblor, Marta; Moreno-Alia, Inmaculada; Bouzas-Caamaño, M-Encarnación; Galan, M-Antonia-Blanco; Deira-Lorenzo, Javier; García-López, Héctor; Arribas-Monzon, Federico-Eduardo; Gómez-Marqués, Gonzalo; Rodríguez-Benot, Alberto; Domínguez-Gil, Beatriz; Álvarez, Emilio-Sanchez (SOCIEDAD ESPAÑOLA DE NEFROLOGIA DR RAFAEL MATESANZ, 2025-04)
    INTRODUCTION: Chronic kidney disease (CKD) will be the second leading cause of death in Spain by 2100. The Spanish Renal Disease Registry (REER) records the incidence, prevalence and mortality of all patients requiring ...
  • The Murcia Twin Registry. A resource for research on health-related behaviour 
    Ordoñana, Juan-Ramón; Sánchez-Romera, Juan-F; Colodro-Conde, Lucía; Carrillo, Eduvigis; González-Javier, Francisca; Madrid-Valero, Juan-José; Morosoli-García, Jose-J; Pérez-Riquelme, Francisco; Martínez-Selva, José-María (ELSEVIER, 2018-01)
    Genetically informative designs and, in particular, twin studies, are the most widely used methodology to analyse the relative contribution of genetic and environmental factors to inter-individual variability. These studies ...
  • Vigilancia de las enfermedades raras en españa: el registro estatal de enfermedades raras (ReeR) 
    Vicente, Esther; Ardanaz, Eva; Ramalle-Gomara, Enrique; Echevarría, Luis-J; Mira, M-Pilar; Pablo-Chalco-Orrego, Juan; Benito, Consuelo; Cuardiola-Vilarroig, Sandra; Mallol, Cristina; Guinaldo, José-Manuel; Carrillo, Patricia; Caffaro, Mercedes; Compes, M-Luisa; Nieves-Caro, M; Alonso, Verónica; Soler, Pilar (Ministerio de Sanidad y Consumo, 2021-11)
    Traditionally, epidemiological surveillance has focused on infectious diseases, but the concept of Public Health surveillance, introduced in Spain with the Law 33/2011, is broader and includes chronic diseases. Health ...

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