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Patient and clinical registries are invaluable resources for researchers and patient organisations. Data about symptoms, care and the demographics of patients are just some of types of information collected around the world.

The need for improved sharing of information and opportunity for cohesion amongst stakeholders was the driving force behind a project to map the registries around the world.

Working in partnership, IMP and UCB, completed a review of publicly listed patient-driven and clinical umbrella registries related to mitochondrial disorders. The poster below was presented at the UMDF Symposium in the USA in June 2023.

The mapping project provides a central resource of currently available data within the global umbrella disease registry environment. 

Click here to download the PDF. 

IMP thanks UCB for their support of this project.

To read more about the Global Mitochondrial Disease Patient Registry, click here.

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