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Philip Yeske Sophia Zilber

Abstract

Patient-populated registries are an important component of rare disease communities for many reasons, including their use as a tool for gathering opinions on specific topics. The Mitochondrial Disease Community Registry (MDCR) was launched in 2014 for this purpose as well as to identify and characterize mitochondrial disease patients from the patient perspective. Data collected over a four year period and provided by adult mitochondrial disease patients and caregivers of pediatric mitochondrial disease patients in response to a single survey are presented. Primary findings include the importance of clinician-patient communication, need for treatment and cure, impact of the disease on the entire life of a person, and quality of life as top issues as described by patients. Despite multiple challenges, patients are hopeful about the future and thankful for the survey. Efforts should be made to identify ways to better support patients, improve communication, and create more trusting and healing relationships between patients and doctors. Additionally, data quality checks showed that more clear and simple questions and shorter more-targeted surveys are needed in order to get accurate and meaningful data that can be used for analysis and research in the future.

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Articles