Exploring the feasibility, reliability and validity of the Xsens 3D movement detector for measuring daily physical activity in patients with Leigh syndrome.

Completed

Conditions: mitochondriele aandoeningen
mitochondrial disease
mitochondrial disorder

Registration Number: NL-OMON40100

Lead Sponsor: niversitair Medisch Centrum Sint Radboud

Brief Summary: Not available

Detailed Description: Not available

Recruitment & Eligibility

Status: Completed

Sex: Not specified

Target Recruitment: 7

Inclusion Criteria

Patients aged 0-18 years
- With on the MRI Leigh or Leigh-like syndrome
- And mitochondrial dysfunction in biochemical analysis of fresh muscle
- Who are regularly monitored in the Nijmegen Centre for Mitochondrial Disorders.

Exclusion Criteria

It is expected that the trip to the hospital is too burdensome for the patient.
Fever
Epilepsia continua
Altered consiousness (according to parents/caretakers)

Study & Design

Study Type: Observational non invasive

Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
<p>1. To determine the feasibility, reliability and validity of the Xsens 3D<br /><br>motion detector for measuring daily activity in children with mitochondrial<br /><br>disease and severe mental and / or physical disabilities.<br /><br>a) Feasibility for measuring for 2 days<br /><br>b) Reliability: for how many percent of the time does the Xsens 3D motion<br /><br>detector obtain reliable data?<br /><br>c) Validity:<br /><br>o Agreement between Xsens data and the standardized<br /><br>movements (if possible by means of the GMFM) for 30 minutes<br /><br>o Correlation between Xsens data and activity reported by<br /><br>the parents (reported on a scale of 0 to 10 every hour) for 1 weekend</p><br>

Secondary Outcome Measures

Name	Time	Method
<p>1. Patterns in the frequency, duration, type and intensity of movements in<br /><br>patients with Leigh syndrome<br /><br>2. Patterns of movements in spasticity and various movement disorders<br /><br>3. Testing the feasibility of the GMFM, Tardieu and MDRS<br /><br>4. Get an indication of the frequency, duration, type and intensity of<br /><br>movements related to how the patient feels. </p><br>