Mitochondrial Disease
Conditions
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.
Interventions
None listed
Sponsors
National Institutes of Health (NIH)
University of South Florida
Study design
Observational model
COHORT
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Healthy volunteers
Yes
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| 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
| Measure | Time frame | Description |
|---|---|---|
| Assess the attitudes of patients and parents towards use of nutritional supplements in patients with mitochondrial disease | Upt 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. |
Countries
United States
Outcome results
None listed