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

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

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

NL-OMON

Registry ID

NL-OMON40100

Enrollment

Registered

2013-04-11

Start date

2015-04-01

Completion date

Unknown

Last updated

2024-04-29

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

mitochondriele aandoeningen mitochondrial disease mitochondrial disorder

Interventions

None listed

Eligibility

Age

2 Years to 17 Years

Inclusion criteria

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

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)

Design outcomes

Primary

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

Measure

Time frame

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

—

Secondary

Measure	Time frame
1. Patterns in the frequency, duration, type and intensity of movements in patients with Leigh syndrome 2. Patterns of movements in spasticity and various movement disorders 3. Testing the feasibility of the GMFM, Tardieu and MDRS 4. Get an indication of the frequency, duration, type and intensity of movements related to how the patient feels.	—

Countries

Netherlands

Outcome results