20 November 2023

Primary mitochondrial disorders (PMD) continue to be without any curative or evidence-based therapies, but in many cases, clinicians use one or more vitamins or cofactors to support the patient’s mitochondrial function/metabolism and thereby help to alleviate the patient’s health complaints.

In order to improve our understanding of which vitamins and cofactors clinicians use to support patients with PMD, the MetabERN’s Pyruvate metabolism mitochondrial oxidative phosphorylation disorders, Krebs cycle defects, disorders of thiamine transport and metabolism subnetwork [PM-MD (Mito)] has prepared a questionnaire.

The aims of this survey are:

1. to map the daily practice ofvitamin and cofactor use among physicians treating children and adults affected by PMD
2. to use information from the survey to begin to develop recommendations for the use ofvitamins and cofactors to support patients affected by PMD

The questionnaire is open to all PMD specialists from around the world until December 31, 2023. Answering takes 15-20 minutes. Please share this questionnaire with your colleagues in other centers/countries!

Thank you for your cooperation!