Follow You intervention study: Effectiveness of a multidisciplinary training program on daily physical functioning in children and young adolescents with a hereditary connective tissue disorder: a feasibility study
- Conditions
- extreme flexibilityHeritable Connective Tissue Disorder10028396
- Registration Number
- NL-OMON50966
- Lead Sponsor
- Academisch Medisch Centrum
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Recruiting
- Sex
- Not specified
- Target Recruitment
- 20
Children and adolescents (6-18 years old) who are diagnosed with either Marfan
syndrome, Ehlers-Danlos Syndromes or Loeys-Dietz syndrome, who are treated in
the Amsterdam University Medical Center, location AMC or Reade Amsterdam. The
origin of the children/adolescents and their parents can be of every country
and/or ethnicity .
Children/ adolescents who, next to the Marfan syndrome, Ehlers-Danlos Syndromes
or Loeys-Dietz syndrome, have another prominent chronic disease affecting their
physical functioning, or children who are seriously cognitive impaired or
completely wheelchair dependent.
In addition, for children with MFS, LD and EDS-vascular type permission from
the cardiologist is required for participation in this study
Study & Design
- Study Type
- Interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method
- Secondary Outcome Measures
Name Time Method