Patient registries - tools

• Patient Foundations Guide to Starting a Registry

• Patient Registry Transparency Checklist

• Myths VS Facts About Patient Registries

• Patient Registries: Frequently Asked Questions

• Patient registry design guide for rare disease foundations

Patient registries - podcasts

• Podcast: Getting to quality research from patient registries

• CoRDS Podcast: Recruiting to Patient Registries

• Cords Podcast: Cure Mito Foundation

Patient registries - papers

• Patient Registry Paper: Preprint

• Mitochondrial Disease Community Registry: First look at the data

Patient registries - posters

• Poster: Leigh Syndrome global patient registry

• Poster: Patient registries: patients' feedback and best practice

Patient registries - presentations

• Interoperability of Registry Data with Regulatory Submissions

• Building a Worldwide Community: Leigh Syndrome Patient Registry

• Leigh Syndrome Global Patient Registry updates

• Data Management and Analysis – Example from Leigh Disease Global

• Future of Mitochondrial Disease Research Powered by Your Data

• Targeting mitochondria conference - MDCR registry