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7411: Nutritional Supplement use in Mitochondrial Disease

Status: No Longer Recruiting

Study Paper
A new paper is now available online (open access) at http://www.sciencedirect.com/science/article/pii/S1096719216301275?via%3Dihub

 

Summary

The purpose of this study is to learn more about nutritional supplement use in patients with confirmed mitochondrial disorders.

 

This Study is for:

  • Alpers syndrome
  • Aminoglycoside-induced deafness
  • Barth syndrome
  • Carnitine transporter defects
  • Cardiomyopathy
  • Complex I deficiency
  • Complex II deficiency
  • Complex III deficiency
  • Complex IV deficiency
  • Complex V deficiency
  • CPEO
  • CPEO "plus"
  • Diabetes & deafness
  • Encephalomyopathy
  • Hepatocerebral syndrome
  • Kearns-Sayre syndrome
  • Leigh syndrome
  • Leber hereditary optic neuropathy (LHON)
  • Leukoencephalopathy
  • Maternal-inherited deafness
  • MELAS
  • MERRF
  • MNGIE
  • MIRAS
  • Mitochondrial depletion
  • Myopathy
  • NARP
  • Pearson syndrome
  • Reversible infantile myopathy with cytochrome c oxidase deficiency
  • SANDO
  • Pyruvate dehydrogenase deficiency
  • Pyruvate carboxylase deficiency
  • Coenzyme Q10 deficiency
  • Other: Fatty acid oxidation disorder.
 

Summary

Background

Our goal is to better assess which nutritional supplements are prescribed to patients with mitochondrial disorders, the monitoring obtained and whether any subjective improvements are noted by the patients or their caregivers.

 

About this Study

This research survey consists of an online survey developed by researchers from NAMDC. The survey consists of 21 questions. You may choose to skip any question(s) that you do not wish to answer. The survey will take approximately 40 minutes to complete.

 

Target Enrollment: 50

To be eligible to participate, you must:

  1. Have a diagnosis of mitochondrial disease or any other metabolic disorder
  2. Be a North American Mitochondrial Disease Consortium contact registry participant

You are not eligible to participate if:

  1. You cannot provide informed consent and complete survey
  2. You are not participating in the North American Mitochondrial Disease or RDCRN contact registry
 

How to participate:

This study is no longer recruiting patients.

To be notified of future research, please Join the Contact Registry