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Questionnaire on the Treatment of Primary Mitochondrial Disorders with Vitamins and Cofactors

Questionnaire on the Treatment of Primary Mitochondrial Disorders with Vitamins and Cofactors
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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 of vitamin 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 of vitamins 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!

Start answering the questionnaire

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Last News & Events

  • Questionnaire on the Treatment of Primary Mitochondrial Disorders with Vitamins and Cofactors
  • Positive Results for MetabERN and ASUFC in the Five-Year Evaluation Process of European Reference Networks (ERN)
  • 20th Annual WORLDSymposium – February 4-9, 2024
  • DCTEP Learners’ Stories:  What does an educational programme on IMDs have to offer to young healthcare professionals?
  • Call on the EU institutions and EU Member States’ governments to stand by the European Reference Networks
  • MOOC From Lab to Clinic: Translational Research for Rare Diseases
  • DCTEP learners’ stories: How does an e-learning on IMDs really look like?
  • Conference on Rare diseases and European reference networks in Bilbao

Activities

  • Publications and Guidelines
  • Unified Registry for Inherited Metabolic Disorders
  • Projects

Disclaimer

MetabERN is a European Reference Network (ERN) approved by the ERN Board of Member States.
The ERNs are co-funded by the European Commission.
For more information about the ERNs and the EU health strategy, please visit ec.europa.eu/health/ern
The content on this website represents the views of the network and is its sole responsibility; it can in no way be taken to reflect the views of the European Commission or any other body of the European Union.

For more information please contact
Prof. Maurizio Scarpa, MD, PhD
MetabERN Coordinator

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