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| Name | Class |
|---|---|
| National Institutes of Health (NIH) | NIH |
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The purpose of this study is to learn about the use of nutritional supplements in patients with mitochondrial disease.
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.
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| Measure | Description | Time Frame |
|---|---|---|
| Assessment of nutritional supplement use in patients with mitochondrial disease. | This cross-sectional survey will assess nutritional supplements used by patients with mitochondrial disease. | Up to one year after study activation. |
| Measure | Description | Time Frame |
|---|---|---|
| Assess the attitudes of patients and parents towards use of nutritional supplements in patients with mitochondrial disease | 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. | Upt to one year after study activation. |
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Inclusion Criteria:
Exclusion Criteria:
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Participants will be recruited through the NAMDC Clinical Registry and RDCRN Contact Registry. Additional means of recruitment may be used to direct patients to join the NAMDC or RDCRN registries.
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| Name | Affiliation | Role |
|---|---|---|
| Sumit Parikh, MD | The Cleveland Clinic | Study Chair |
| Amel Karaa, MD | Massachussetts General Hospital | Study Chair |
| Michio Hirano, MD | Columbia University | Study Chair |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of South Florida | Tampa | Florida | 33612 | United States |
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| Label | URL |
|---|---|
| Rare Diseases Clinical Research Network NAMDC page | View source |
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| ID | Term |
|---|---|
| D028361 | Mitochondrial Diseases |
| ID | Term |
|---|---|
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
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