title: Survival in Duchenne muscular dystrophy.
abstract: OBJECTIVE
  To determine the survival in a population of German patients with Duchenne muscular dystrophy.
  
  
  METHODS
  Information about 94 patients born between 1970 and 1980 was obtained by telephone interviews and questionnaires. In addition to age of death or actual age during the investigation, data concerning clinical course and medical interventions were collected.
  
  
  RESULTS
  67 patients with molecularly confirmed diagnoses had a median survival of 24.0 years. Patients without molecular confirmation (clinical diagnosis only) had a chance of 67 % to reach that age. Grouping of our patient cohort according to the year of death (before and after 2000), ventilation was recognized as main intervention affecting survival with ventilated reaching a median survival of 27.0 years. For those without ventilation it was 19.0 years.
  
  
  CONCLUSIONS
  our study provides survival data for a cohort of DMD patients in Germany stratified by year of death. Median survival was 24.0 years in patients confirmed by molecular testing. Ventilated patients had a median survival of 27 years. We consider this piece of information helpful in the medical care of DMD patients.
authors.affiliation: Abteilung für Medizinische Genetik, Universität Tübingen, Germany.
authors.forename: Susanne
authors.initials: S
authors.lastname: Rall
authors.forename: Tiemo
authors.initials: T
authors.lastname: Grimm
mesh_terms: D002648:Child; D002675:Child, Preschool; D005260:Female; D005858:Germany / Q000453:epidemiology; D006801:Humans; D007223:Infant; D053208:Kaplan-Meier Estimate; D020388:Muscular Dystrophy, Duchenne / Q000401:mortality* / Q000628:therapy; D011788:Quality of Life; D012121:Respiration, Artificial
keywords: duchenne muscular dystrophy; survival; ventilation