Mitochondrial Video Assessment Source Material Study

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

28 participants

Study Classification

OBSERVATIONAL

Study Start Date

2023-06-16

Study Completion Date

2024-02-02

Brief Summary

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Source material collection of videos to develop the Mitochondrial Video Assessment (MVA) for patients with mitochondrial myopathies.

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Detailed Description

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This observational research is being conducted to facilitate the development of 2 related, disease-specific outcome measures assessing ease of movement in PMM and PolG clinical trials. The Mitochondrial Video Assessment (MVA) utilizes remote video capture to assess subtle shifts in compensatory movement patterns and measure change in function over time, and the Current State Questionnaire asks participants about external factors in their daily lives which may influence fluctuations in their symptoms. As part of the questionnaire, participants are asked to rate their own perception of their functional ability using a Patient Global Impression of Severity (PGI-S) scale.

Conditions

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PolG, Primary Mitochondrial Myopathy

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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PolG

Genetically confirmed PoLG patients 16 years or older

No interventions assigned to this group

PMM

Genetically confirmed Primary Mitochondrial Myopathy patients 16 years or older

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

* 16 years old and above
* Confirmed diagnosis of PMM or PolG
* Ability to understand and speak English
* Ability and willing to consent
* Able and willing to participate and perform tasks while being recorded
* Designating a recording partner to assist with video captures is strongly advised, but not required