Building a Patient-Centered Community by Generating Meaningful Data, Enhancing Collaborations, and Accelerating Outcomes
Calgary, AB – Lumiio is proud to announce the launch of MitoCanada’s mitochondrial disease patient registry. This registry will enable a fulsome understanding of mitochondrial disease patients from across Canada by capturing critical information directly from patients. These valuable insights benefit the community by supporting research partnerships across the country, advancing patient advocacy efforts, and attracting clinical trials.
“MitoCanada believes this patient registry is a powerful tool that will enhance our understanding of mitochondrial diseases and the people affected by them,” says Kate Murray, CEO and President of MitoCanada. “This registry will encourage collaboration, discovery, and application of information through knowledge translation for many audiences. For MitoCanada, the patient registry’s ultimate goals will be to hasten diagnosis, improve care and health outcomes, and enhance the quality of life of those living with mitochondrial disease.”
Mitochondria are responsible for creating more than 90% of the energy needed to sustain life and support organ function. Mitochondrial disease represents a diverse group of disorders caused by dysfunctional mitochondria which typically affect multiple organ systems in the body and can cause overwhelming debilitation, and even death. There are over 300 known diseases associated with mitochondrial dysfunction. New diseases are routinely being added; all are without cures.
An estimated 1 in 4,000 people are affected by a mitochondrial disease. Generating meaningful data, which will lead to a better understanding of the patient experience, is critical for hastening the speed and accuracy of diagnosis, improving quality of life, supporting patient opportunities for novel therapeutic clinical trials, and building a patient-centered mitochondrial disease community within Canada.
Lumiio is a global digital health company that specializes in real-world data collection services that drive health outcomes. Lumiio connects stakeholders in health communities by aligning interests and working towards the common goal of improving solutions for diagnostics, treatment, and care. At Lumiio, the social science leads the data science by combining classical research methods with innovative technologies and digital strategies.
For more about Lumiio visit lumiio.com.
MitoCanada is a federally incorporated not for profit organization dedicated to ensuring all lives are powered by healthy mitochondria. Everyday, the foundation works to increase awareness of mitochondrial disease, ensure access to diagnostic tests that facilitate early and accurate diagnosis, develop clinical care models to offer hope and protect quality of life, and supports patient-oriented research to enhance the basic understanding of mitochondrial health and disease.
For more information about the foundation, visit MitoCanada.org.
Article provided by Lumiio