title: Estimating the burden of scleroderma disease in Spain.
abstract: OBJECTIVE
  Scleroderma (systemic sclerosis) is a rare disease that results in great suffering. We estimated the burden of disease posed by scleroderma and its relative importance in the health of the Spanish population.
  
  
  METHODS
  We estimated scleroderma-based burden of disease following procedures developed for the Global Burden of Disease study to ensure comparability.
  
  
  RESULTS
  Despite its low prevalence, scleroderma generated 1732 disability-adjusted life-years (DALY) in Spain in 2001, comprising 562 (32%) years of life lost and 1170 (68%) years lived with disability. Most scleroderma-related DALY (73%) occurred in the population aged 15-54 years. Estimated DALY accounted for 0.59% of other musculoskeletal disorder-related DALY in the European A subregion (countries with low mortality rate in both adults and children in the World Health Organization classification), a significant value in the overall burden of disease.
  
  
  CONCLUSIONS
  The burden of scleroderma in Spain was high, with disability being the major contributing factor. Burden of disease is an important measure in rare diseases, and may be an important indicator to be considered as a health unit in developed countries.
authors.affiliation: Instituto de Investigacion de Enfermedades Raras, Instituto de Salud Carlos III, Sinesio Delgado 6-8, Madrid, Spain.
authors.forename: Ana
authors.initials: A
authors.lastname: Villaverde-Hueso
authors.forename: Elena
authors.initials: E
authors.lastname: Sánchez-Valle
authors.forename: Elena
authors.initials: E
authors.lastname: Alvarez
authors.forename: Consuelo
authors.initials: C
authors.lastname: Morant
authors.forename: Patricia E
authors.initials: PE
authors.lastname: Carreira
authors.forename: María Concepción
authors.initials: MC
authors.lastname: Martín-Arribas
authors.forename: Ricard
authors.initials: R
authors.lastname: Gènova
authors.forename: Alejandro
authors.initials: A
authors.lastname: Ramírez-González
authors.forename: Manuel Posada
authors.initials: MP
authors.lastname: de la Paz
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D017281:Cost of Illness; D004185:Disability Evaluation; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D019057:Quality-Adjusted Life Years; D012595:Scleroderma, Systemic / Q000191:economics / Q000453:epidemiology* / Q000503:physiopathology; D013030:Spain / Q000453:epidemiology