Overview
Source material collection of videos to develop the Mitochondrial Video Assessment (MVA) for patients with mitochondrial myopathies.
Description
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.
Eligibility
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
Exclusion Criteria:
- N/A