To improve the quality of life and physical condition of children with mitochondrial disease.
ID
Source
Brief title
Condition
- Other condition
Synonym
Health condition
mitochondriele aandoeningen
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
Quality of life and a better physical - and feeding condition.
Secondary outcome
nvt
Background summary
We assume that nutritional intervention with an individualized diet and optimal
dietary intake in children with a mitochondrial disease supported by aerobic
conditional training improves the energy generating capacity, the clinical
condition and the quality of life in patients.
Study objective
To improve the quality of life and physical condition of children with
mitochondrial disease.
Study design
We will prospectively evaluate and follow up the clinical features, biochemical
characteristics, neuro-imaging and neurophysiological findings, motor
development, exercise tolerance, dietary intake, nutritional state,
anthropometric parameters, energy expenditure, respiratory quotient and the
histological and biochemical findings in muscle in all children. We will
evaluate the state of health, psychomotor development, level of fatigue,
clinical progression and the quality of life with appropriate validated
clinical questionnaires. After detailed evaluation we will offer nutritional
intervention and advise for physiotherapy and general activity including an
individualized exercise program for children with exercise intolerance for the
second half year. Over a year all evaluations will be repeated except for the
muscle biopsy.
Intervention
A individual diet
Aerobic physiotherapy
Study burden and risks
The patients may benefit from new insights in energy metabolism of
mitochondrial diseases.
Geert Grooteplein-Zuid 10
6525 GA Nijmegen
Nederland
Geert Grooteplein-Zuid 10
6525 GA Nijmegen
Nederland
Listed location countries
Age
Inclusion criteria
MDC-score > 5 (zie protocol pag 2)
Exclusion criteria
MDC-score < 5 (zie protocol pag 2)
Design
Recruitment
Medical products/devices used
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
Register | ID |
---|---|
CCMO | NL21241.091.07 |