connective tissue disorder hyperextensibility of joints
Conditions
Interventions
None listed
Sponsors
Academisch Medisch Centrum
Eligibility
Age
2 Years to 17 Years
Inclusion criteria
Inclusion criteria: This study will include children and adolescents (4-18 years old) who are diagnosed with either Marfan syndrome, Ehlers-Danlos Syndromes or Loeys-Dietz syndrome. In the Netherlands, children need to be treated in the Amsterdam University Medical Centers (UMC), location AMC, or in another hospital when the children are diagnosed with Ehlers-Danlos. In Belgium, children need to be treated in the University Hospital Ghent (UZ-Ghent). The origin of the children and parents can be of every country and/or ethnicity.
Exclusion criteria
Exclusion criteria: 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.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| This study will assess musculoskeletal complaints (pain, flexibility), physical capacity (cardiorespiratory endurance and muscle strength), physical performance (motor performance, activity level). | — |
Secondary
| Measure | Time frame |
|---|---|
| Intelligence, psychological and social functioning. | — |
Countries
Netherlands
Outcome results
None listed