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Home Based Personalized Training and Video Consultation in Mitochondrial Myopathies: Study of Efficacy and Tolerance.

RecruitingNAAges 18 Years - anyAllCentre Hospitalier Universitaire de Nice
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In plain words

What the trial is, and whether it could suit you

Positive effect of physical activity on health arouses a strong interest at international level and is developped within the scope of national programs. Recommandations exist but must be designed for patients with functional limitations of activities. Patients with mitochondrial diseases have exercice intolerance with an increase of muscular weakness and fatigue after low exercice volume. Theses patients have functional limitations of activities. In order to establish an appropriate training programme, it will be important to define and consider the physical condition. The Society of Mitochondrial Medecine published recommandations for management of theses patients,However, theses recommandations do not allow them to propose a training program of what can be done. For these vulnerable patients, therapists are responsible fo advising a training programm without guidelines to establish it

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๐Ÿ“‹ Eligibility rules (as published)
Inclusion criteria: * patient over 18 years-old, * with genetically-confirmed mitochondria myopathy, * with mitochondrial DNA mutation, * clinically dominant myopathic-like disorders according investigator, * able to walk with or without assistance, * likely to be followed for at least one year without interruption by video consultation (implying internet connexion with computer and camera or smartophone), * having given the written and informed consent and being social security member. * For patients in childbearing age, she must have used at least one month if reliable contraception. Exclusion criteria: * patient wih pathology or comorbidity incompatible with the conduct of the study according the investigator during inclusion visit, * patient with physical condition incompatible with training program according investigator during inclusion visit, * patient having a physical tiredness and/or myalgia during last week with an intensity of 6 on visual and analog scale, * pregnant or nursing patient, * patient expecting pregnancy during the course of the study, * patient protected by law or under guardianship or curatorship, or not able to participate in a clinical trial under L.1121-16 article of French Public Health Regulations.
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What it tests

  • Personalized and mixed training program
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Where

1 site
CHU de Nice
Nice, France
๐Ÿค Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible โ€” always decide together with your own doctor.
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