The Swiss Patient Registry for DMD/BMD and SMA was launched in 2008 in order to give Swiss patients access to new therapies. It was founded with the financial support of several patient organizations and research foundations. Since 2008, children, adolescents and adults with DMD, BMD and SMA are registered with the help of all major muscle centers in Switzerland. After nearly ten years of activity, the Swiss Patient Registry for DMD/BMD and SMA implemented several adaptations in 2018 to meet current and future expectations of patient's organizations, health authorities and research organizations.
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Personal data
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Initial symptoms
Timeframe: At diagnosis
Age at initial symptoms and diagnosis
Timeframe: At diagnosis
Family history
Timeframe: At diagnosis
Investigations
Timeframe: At diagnosis
Diagnosis
Timeframe: At diagnosis
Change of living status
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change of living status II
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change in height
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change in weight
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change in head circumference
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change in motor development and motor functions
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change in musculoskeletal system
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
History of surgeries
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change in cardiac function
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change in pulmonary function
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change in nutritional habits
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change in cognition
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change in education
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change in therapies
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change in orthopaedic situation
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change in treatments
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change in side effects
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change in comorbidities
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
History of hospitalizations
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change in disease specific markers
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Change in epilepsy
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
History of participation in clinical trials and research studies
Timeframe: Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)
Questionnaire data
Timeframe: 0-80 years