The main goal of the project is provision of a global registry for mitochondrial disorders to harmonize previous national registries, enable world-wide participation and facilitate natural history studies, definition of outcome measures and conduction of clinical trials.
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Newcastle Mitochondrial Disease Scale for Adults (NMDAS), Sections I-III
Timeframe: The individual participants are followed with annual assessments over a long time period (up to 30 years) or until discontinuation or death.
Newcastle Pediatric Mitochondrial Disease Scale for Children (NPMDS)
Timeframe: The individual participants are followed with annual assessments until they reach the next age group version (up to 18 years) or until discontinuation or death.
Scale for the assessment and rating of ataxia (SARA) in adults
Timeframe: The individual participants are followed with annual assessments over a long time period (up to 30 years) or until discontinuation or death.
Disease progression
Timeframe: The individual participants are followed with annual assessments over a long time period (up to 30 years) or until discontinuation or death.