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The Lily Foundation in the UK will be the first patient organisation to launch the Global Mitochondrial Disease Patient Registry in 2023, with other organisations and countries to follow closely behind.
 
Progress on the development of the Registry is continuing. The platform has been agreed with the Geomit Consortium, ensuring that deidentified data can be matched with that from the Global Clinical Mitochondrial Disease Registry. This will provide researchers with a unique global clinical and natural history dataset.
 
Details of the Governance Committee are being developed and discussions are taking place regarding the roles and responsibilities of each partner.
 
Work Package 2 (IMP, The Lily Foundation, Mitocon, AMMi, DGM and key experts) will seek additional input from Regulators regarding its progress. We looking forward to connecting with the pharmaceutical industry to update them on the developments towards the end of the year.
 
Thank you to our members who have indicated an interest in running the Patient Registry in your country. We are excited to see this project becoming a reality.

Click here for information on the Global Mitochondrial Disease Patient Registry.

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