The Lily Foundation launches UK Mito Patient Registry - News - The Lily Foundation
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The Lily Foundation launches UK Mito Patient Registry

Research

22 November 2022

The Lily Foundation is proud to announce the launch of a new online database that will give people with mitochondrial diseases a voice in research and care provision.

A adult sits facing the camera behind a lap top working using a mouse

The Lily UK Mito Patient Registry, launched this month to coincide with the charity's 15th anniversary, is a powerful online tool that lets people with a diagnosis of mitochondrial disease log details about their condition and how it affects their daily life. That information can then be used to help direct research, improve understanding about mitochondrial disorders and facilitate patient access to clinical trials.

Patients who choose to sign up have full control over how their information is used. They can update it over time and without having to visit a clinic, giving a valuable insight into how a specific disease affects their daily life. Users can also opt in to be contacted about any clinical trials or studies relevant to them.

The Patient Registry is part of The Lily Foundation's ongoing commitment to giving patients and their families a strong voice in scientific research into mitochondrial disease. Patients are the best source of knowledge when it comes to advancing our understanding about mitochondrial disease, and from an ethical viewpoint it's important to give those who are living with the condition – or caring for someone affected – a say in research that will likely impact the development of treatments and clinical care.

Online technologies are revolutionising how patients can be involved in research. Secure, digitised databases offer a way to gather complex data on rare diseases, organise it efficiently and make it available to scientists and clinicians. Investment in such technologies has been a priority for The Lily Foundation in recent years, with several exciting projects underway that will benefit patients and the wider field of mitochondrial research.

The Lily Foundation is the largest charitable funder of mitochondrial disease in Europe, and advocates for thousands of people affected by the disease. The UK Mito Patient Registry was developed with input from patients groups to ensure patient-centric outcomes.

Commenting on the launch, Katie Waller, Science & Patient Engagement Officer for The Lily Foundation, said: "Giving patients a voice in research is essential to ensure the right research priorities and outcomes, particularly with a rare and complex condition like mitochondrial disease. As with all rare diseases, collecting sufficient patient data to establish research priorities and set up clinical studies can be challenging, so having an efficient, secure and user-friendly registry that patients can update from home is really useful. It will help build a more accurate picture of people's lived experience of mitochondrial disease, so we can set better treatment guidelines, identify gaps in care provision and speed up research. Ultimately, it will help us get closer to finding a cure."

The UK Mito Patient Registry is just one of several Lily-funded mitochondrial disease research projects underway. To find out more about Lily research, click here.

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