Growing into adulthood with Duchenne Muscular Dystrophy – comparing patient experiences and systems to optimize care
Recruiting
- Registration Number
- DRKS00029270
- Lead Sponsor
- European Joint Programme for Rare Diseases
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Recruiting
- Sex
- Male
- Target Recruitment
- 650
Inclusion Criteria
Patients with the diagnosis DMD (age 15-25 years old), their relatives and the health care professionals involved in the transition process, living in Canada, Germany, and Italy.
Exclusion Criteria
Patients with other diagnosis, siblings; and other professionals (e.g. teacher)
Study & Design
- Study Type
- observational
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method In the qualitative comparison, differences and similarities on the level of patients/relatives and care organizations with regard to the implementation of transition guidelines will be examined.
- Secondary Outcome Measures
Name Time Method In the quantitative part, different quantifiable transition-aspects from the patient-view point will be assessed through standardized questionnaires. Differences between the three different countries as well as between three different age groups will be examined.