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Survey on Supplement Use in Mitochondrial Disease

Completed
Conditions
Mitochondrial Disease
Registration Number
NCT02311257
Lead Sponsor
University of South Florida
Brief Summary

The purpose of this study is to learn about the use of nutritional supplements in patients with mitochondrial disease.

Detailed Description

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.

Recruitment & Eligibility

Status
COMPLETED
Sex
All
Target Recruitment
162
Inclusion Criteria
  • NAMDC Clinical Registry or RDCRN Contact Registry participant
  • Diagnosis of a mitochondrial disease confirmed by either electron transport chain abnormalities or molecular testing.
Exclusion Criteria
  • Lack of participation in NAMDC or RDCRN registries
  • Diagnosis of mitochondrial disorder not confirmed by ETC studies or molecular diagnosis

Study & Design

Study Type
OBSERVATIONAL
Study Design
Not specified
Primary Outcome Measures
NameTimeMethod
Assessment of nutritional supplement use in patients with mitochondrial disease.Up to one year after study activation.

This cross-sectional survey will assess nutritional supplements used by patients with mitochondrial disease.

Secondary Outcome Measures
NameTimeMethod
Assess the attitudes of patients and parents towards use of nutritional supplements in patients with mitochondrial diseaseUpt to one year after study activation.

This cross-sectional survey will assess patients' and parents' attitudes (comfort level and perceptions of efficacy) of use of nutritional supplements in patients with mitochondrial disease.

Trial Locations

Locations (1)

University of South Florida

🇺🇸

Tampa, Florida, United States

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