Irene Carrión-Barberà, Ivan Castellví, Carmen Carrasco Cubero, Javier Narváez, Pilar Trenor Larra, Susana Holgado, Iñigo Rúa-Figueroa, Marina Rodríguez López, Ana Pérez Gómez, Mónica Ibáñez, Beatriz Joven, Patricia Alcocer, Tatiana Cobo-Ibáñez, Alejandro Gómez Gómez, Eva Tomero, Ernesto Trallero-Araguás, Carlos Sánchez-Piedra, Mercedes Freire, Rafaela Ortega-Castro, Alberto Ruiz-Román, Nuria Lozano, Laura Nuño-Nuño, Carmen Larena, Francisca Sivera, Fredeswinda Romero-Bueno, J. Belzunegui, Carmen Barbadillo, Olga Martínez-González, Esmeralda Delgado-Frías, María Esther Ruiz-Lucea, Vega Jovani, Julia Martínez-Barrio, Jordi Camins, and José M. Pego-Reigosa
Objectives To describe the methods of the Spanish Registry of patients with idiopathic inflammatory myopathy (IIM) (Myo-Spain), as well as its strengths and limitations. The main objective of the project is to analyse the evolution and clinical management of a cohort of patients with IIM. Methods Observational, longitudinal, ambispective and multicentre study of a cohort of patients with IIM seen in rheumatology units in Spain. All patients with a diagnosis of IMM will be included in the regular follow-up of the participating centres, regardless of age on initiation of the process. Incident cases will be all patients who at the beginning of the study have been diagnosed for less than 12 months and prevalent cases for more than 12 months. The registry will include data from the visit at baseline, one year and two years. Socio-demographic, clinical, analytical variables, complications, comorbidities, association with other rheumatic diseases, hospital admissions, mortality and treatments will be collected. In addition, indices, scales and questionnaires of activity, muscle involvement, damage, disability, and quality of life will be determined. The recruitment period will be 23 months. The purpose is to obtain a cohort of 400 patients with IMM. Conclusions Myo-Spain registry provides the opportunity to develop a cohort of incident and prevalent patients with IMM in Spain. Myo-Spain will be able to assess in detail the clinical characteristics of the disease at different times. The comprehensive information collected during the visits is expected to provide a broad source of data for future analysis.