title: National registry of patients with systemic lupus erythematosus of the Spanish Society of Rheumatology: objectives and methodology.
abstract: OBJECTIVE
  To describe the objectives, design and methods of the Spanish Society of Rheumatology systemic lupus erythematosus (SLE) registry (RELESSER).
  
  
  METHODS
  Multicenter, hospital-based registry, with retrospective collection of data from a large representative sample of adult patients with SLE (1997 ACR criteria) attending Spanish rheumatology services. The registry includes demographic data, frequent and infrequent (<1%) clinical manifestations, information about activity, damage, severity, comorbidity, treatments and mortality, collecting 359 variables per patient, with highly standardized definitions. We performed a preliminary descriptive analysis of the data.
  
  
  RESULTS
  Forty-five centers were involved and 4,024 SLE patients (91% with ≥ 4 ACR criteria) have been included; 90% are women and 93% caucasians, with a median age at diagnosis of 33 years, median disease duration: 120 months, median follow-up duration: 104 months; 3,222 (81%) of the patients are in active follow-up and 591 (14%) were lost to follow-up. The median values of the SELENA-SLEDAI score, SLICC/ACR damage index and Katz severity index have been 2, 1 and 2, respectively. A total of 211 patients (6%) died.
  
  
  CONCLUSIONS
  RELESSER represents the largest European SLE registry built to date, providing comprehensive and reliable information on SLE manifestations, disease status, comorbid conditions and treatments in daily clinical practice. RELESSER is constituted as a tool of great potential for multicenter clinical research in SLE.
authors.affiliation: Servicio de Reumatología, Hospital Doctor Negrín, Las Palmas de Gran Canaria, España. Electronic address: iruafer@gobiernodecanarias.org.
authors.forename: Iñigo
authors.initials: I
authors.lastname: Rúa-Figueroa
authors.affiliation: Servicio de Reumatología, Hospital Gregorio Marañón, Madrid, España.
authors.forename: Francisco Javier
authors.initials: FJ
authors.lastname: López-Longo
authors.affiliation: Servicio de Reumatología, Hospital Sierrallana, Torrelavega, España.
authors.forename: Jaime
authors.initials: J
authors.lastname: Calvo-Alén
authors.affiliation: Servicio de Reumatología, Hospital 12 de Octubre, Madrid, España.
authors.forename: María
authors.initials: M
authors.lastname: Galindo-Izquierdo
authors.affiliation: Unidad de Investigación de la SER, Madrid, España.
authors.forename: Estíbaliz
authors.initials: E
authors.lastname: Loza
authors.affiliation: Unidad de Investigación de la SER, Madrid, España.
authors.forename: M Jesús
authors.initials: MJ
authors.lastname: García de Yebenes
authors.affiliation: Servicio de Reumatología, Hospital Meixoeiro, Vigo, España.
authors.forename: José M
authors.initials: JM
authors.lastname: Pego-Reigosa
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008180:Lupus Erythematosus, Systemic / Q000175:diagnosis / Q000401:mortality / Q000628:therapy; D008297:Male; D008875:Middle Aged; D016730:Program Development; D012042:Registries; D012189:Retrospective Studies; D012219:Rheumatology; D012955:Societies, Medical; D013030:Spain; D055815:Young Adult
keywords: Lupus eritematoso sistémico; Methodology; Metodología; Registro; Registry; Systemic lupus erythematosus