Mitochondrial disease registries worldwide: A scoping review.

Ammanie Abdul-FatahLeila EsmaeilisarajiCrisel Mae Juan Martin Holcik

Published in: PloS one (2022)

Based on our findings in this review, recommendations were formulated. These include establishing registry objectives, respecting patients and their roles in the registry, adopting international data standards, data evaluations, and considerations to privacy legislation, among others. These recommendations could be used to support designing a future Canadian mitochondrial disease patient registry, and to further research directly engaging these registries worldwide.

Keyphrases

big data
end stage renal disease
oxidative stress
electronic health record
ejection fraction
newly diagnosed
clinical practice
peritoneal dialysis
prognostic factors
healthcare
health information
patient reported outcomes
deep learning
social media