EpidemIBD: rationale and design of a large-scale epidemiological study of inflammatory bowel disease in Spain
Authors: Chaparro María , Barreiro-de Acosta Manuel , Benítez José Manuel , Cabriada José Luis , Casanova María José , Ceballos Daniel , Esteve María , Fernández Hipólito , Ginard Daniel , Gomollón Fernando , Lorente Rufo , Nos Pilar , Riestra Sabino , Rivero Montserrat , Robledo Pilar , Rodríguez Cristina , Sicilia Beatriz , Torrella Emilio , Garre Ana , García-Esquinas Esther , Rodríguez-Artalejo Fernando , Gisbert Javier P. ,   EpidemIBD study group of GETECCU, Abraldes A. , Benítez J.M. , Calderón M.R. , Camargo R. , Hernández-Martínez A. , Iglesias E. , Leo E. , Marín S. , Monrobel A. , Núñez A. , Ruiz N. , Tejada M. , Torres Y. , Alcalá M.J. , Alfambra E. , Ber Y. , Gomollón F. , Mir A. , Montoro M. , Nerín J.M. , Peña E. , Vicente R. , Duque J.M. , de Francisco R. , Mancebo A. , Martínez-González S. , Pérez-Martínez I. , Riestra S. , Varela P. , Alonso- Abreu I. , Ceballos D. , Cruz N. , Guerra E. , Hernández Camba A. , Kolle L. , Marrero J.M. , Pérez N. , Soler M. , Vela M. , Forcelledo J.L.F. , Rivero M. , Lorente R. , Verdejo C. , Montealegre M. , Lucendo A.J. , Roncero O. , Bouhmidi A , Hervías D. , Arias L. , Barrio J. , Fernández-Salazar L. , Fradejas P. , Fuentes A.M. , Hernández L. , López C. , Mata L. , Piñero C. , Sicilia B. , Sierra M. , Vásquez M. , Aceituno M. , Bautista M. , Calvet X. , Esteve M. , Montserrat A. , Gómez- Valero J.A. , Gordillo J. , Ledezma C. , Lluis L. , Martínez-Cerezo F.J. , Menacho M. , Navarro- Llavat M. , Rodríguez S. , Sabat M. , Sampedro M.J. , Sainz E. , Sesé E. , Silva A. , Torra S. , Torrealba L. , Vila C. , Ágreda Chinea M. , Algaba A. , Bermejo F. , Blázquez I. , Bosch O. , Botella B. , Casanova M.J. , Castaño-Milla C. , Chaparro M. , Lucas R. de , Domínguez-Antonaya M. , Donday M.G. , Durán A. , Galve M.L. , García L. , Garre A. , Gisbert J.P. , Guerra I. , Jiménez P. , López-Cauce B. , López-Sanromán A. , López P. , Marín-Jiménez I. , Martín-Arranz M.D. , McNicholl A.G. , Olmos J.A. , Opio V. , Pérez-Calle J.L. , Plaza R. , Ponferrada A. , San Miguel E. , Sánchez E. , Vera-Mendoza I. , Aguas M. , García-Sepulcre M. , Gutiérrez A. , Herreros B. , Huguet J.M. , Jiménez N. , Maroto N. , Martí L. , Mínguez M. , Muñoz M. , Navarro P. , Nos P. , Ramírez J.J. , Roldán M. , Pozzati L. , Robledo P. , Barreiro-de Acosta M. , Bastón-Rey I. , Carmona A. , Carpio D. , Castro E. , Crespo B. , Diz-Lois M.T. , Echarri A. , Fernández-de Castro J.D. , Fernández E. , Ferreiro-Iglesias R. , Hernández V. , López A. , Pérez P. , Ruiz M.J. , Vega P. , Calafat M. , Ginard D. , Iyo E. , Novella M.T. , Reyes J. , Rodríguez C. , Royo V. , Sapiña A. , Fernández H. , Fraile M. , García A. , Lapeña B. , Revuelta S. , Irisarri R. , Kutz M. , Nantes Ó. , Rodríguez C. , Rubio S. , Vicuña M. , Alonso H. , Cabriada J.L. , Castiella A. , Galdona I. , Maíz A. , Muñagorri Santos A.I. , Muro N. , Ortiz J. , Otegui N. , Rodríguez-Lago I. , Spicakova K. , Zapata E.M. , Zubiaurre L. , Castillo-Espinosa J.M. , Martínez Bonil M.C. , Martínez Pascual C. , Nicolás I. , Torrella E. 
Published: May 2019

Background: Inflammatory bowel disease (IBD) is associated with a considerable burden to the patient and society. However, current data on IBD incidence and burden are limited because of the paucity of nationwide epidemiological studies, heterogeneous designs, and a low number of participating centers and sample size. The EpidemIBD study is a large-scale investigation to provide an accurate assessment of the incidence of IBD in Spain, as well as treatment patterns and outcomes. Methods: This multicenter, population-based incidence cohort study included patients aged >18 years with IBD (Crohn’s disease, ulcerative colitis, or unclassified IBD) diagnosed during 2017 in 108 hospitals in Spain, covering 50% of the Spanish population. Each participating patient will attend 10 clinic visits during 5 years of follow up. Demographic data, IBD characteristics and family history, complications, treatments, surgeries, and hospital admissions will be recorded. Results: The EpidemIBD study is the first large-scale nationwide study to investigate the incidence of IBD in Spain. Enrollment is now completed and 3627 patients are currently being followed up. Conclusions: The study has been designed to overcome many of the limitations of previous European studies into IBD incidence by prospectively recruiting a large number of patients from all regions of Spain. In addition to epidemiological information about the burden of IBD, the 5-year follow-up period will also provide information on treatment patterns, and the natural history and financial burden of IBD.