3rd of November 2018

At the initiative of IMP a scientific workshop on potentially harmful drugs for mitochondrial patients was organised. It took place in Amsterdam on the 1st and 2nd of November. Mitochondrial specialists/clinicians and pharmacologists from all over the world came together to reach consensus about drugs which may or may not be safe to use by mitochondrial patients, children and adults.

At this moment IMP publishes a list of potentially harmful drugs on the website. This list needs to be updated on the basis of new and existing scientific evidence and clinical experience. The entire workshop was sponsored by patient organisations: AEPMI, DGM, Eurordis, IMP, the Lily Foundation, MitoCanada, Mitocon and Muscular Dystrophy UK. They strongly believe that thorough and trustworthy information on drugs is essential for mitochondrial patients.

The group of experts carried out extensive research into existing scientific literature beforehand. At the workshop they discussed safety of all relevant drugs with the purpose of reaching consensus. The two-day workshop was hard work but the complete list of drugs was reviewed and their safety was discussed. The experts reached consensus on all of them. In the coming weeks they will work on a solid scientific document, to be published open access. The following step will be to develop a new table for patients and their families on the basis of the scientific document. There is still much work to do but all parties are dedicated to complete this important task.

We will keep you informed!