leigh syndrome global registry - cords

 

We are partnering with Coordination of Rare Diseases at Sanford (CoRDS)  to create a global patient registry for patients with Leigh Syndrome. Participants are asked to fill out two surveys describing their demographic and general information as well as their experience related to Leigh Syndrome. We encourage all US and International families affected by Leigh Syndrome to join this important effort. For more information, frequently asked questions, and instructions on how to register please click HERE. 

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To see our first presented results please click HERE.

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  medical records - allstripes

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We are partnering with Allstripes and Mitoaction in order to enable medical records collection for patients in US, Canada, and UK, with more countries to be added in the future. Allstripes collects all medical records on behalf of patients and digitizes, structures and abstracts information from the records. For more information, frequently asked questions, and instructions on how to register please click HERE. 

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IRB-approved flyers to download and share with clinicians and patients:

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Flyer showing CoRDS and Allstripes programs in the same flyer

Flyer for CoRDS only

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  data sharing and collaboration - c-path

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Critical Path Institute (C-Path) and Cure Mito Foundation (Cure Mito) announced a joint collaboration to significantly promote data sharing and accelerate Leigh syndrome and other rare mitochondrial disease data incorporation into C-Path’s Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP®). For more information please click HERE.

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papers about data, data standards, and best practices

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TOGETHER we will be able to identify and learn about our patient community, connect patients to research and clinical trial opportunities, and advance treatments for Leigh Syndrome patients.

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If you have any questions, comments, or interest in collaborating, please reach out to us at any time at info@curemito.org.