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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See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
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.