UK Mito Patient Registry

Sign up today and drive change!

The UK Mito Patient Registry (UKMPR) is a powerful tool that brings real benefits to the mito community, and gives patients a voice in research and care provision. By signing up, you will be helping the search for effective treatments and a cure for mito.

Please sign up for your personal Lily Account. Once your account has been created you will then be able to access the UK Mito Patient Registry via your personal dashboard.

How does it work?

The registry is a secure online database where people with mitochondrial diseases can securely log details of their condition, so it can be used to help direct research and facilitate patient access to clinical trials. It takes between 5-20 minutes to register using the online form.

Patients who sign up have full control over how their information is used. They can update it over time, giving a valuable insight into how a specific disease affects their daily life. Patients can also choose to be contacted about any clinical trials and studies relevant to them. 

What are the benefits to signing up? 

Your lived experience of mito is incredibly valuable. Your contribution to the UKMPR will help to:

  • Increase understanding of different mitochondrial diseases
  • Advance research into effective treatments and cures 
  • Tailor medical research and care services to the needs of patients
  • Facilitate recruitment of patients for clinical trials and studies
  • Develop better treatment guidelines for specific diseases
  • Attract the best research and clinical trials to the UK from around the world
  • Identify and address gaps in national care provision
  • Raise awareness about patient numbers and campaign for change

Who can sign up?

Anyone with a confirmed clinical diagnosis of mitochondrial disease can take part. If you are under investigation for mito, you can still sign up and then update your details if a diagnosis is made.

Can I register my child?

Yes. Parents of children under the age of 18 with a clinically confirmed diagnosis of mitochondrial disease can register their child.

What about access to clinical trials?

When you sign up, you can agree to be contacted by The Lily Foundation about upcoming patient trials and studies relevant to your disease. There is no obligation to take part in trials, and you can change your options at any time. 

Can I control how my information is used?

Yes. Information is submitted voluntarily and is stored in a way that means you can only be identified by a very small number of approved individuals. We will never share identifiable data or contact details with third parties without your permission.

If you would like more detailed information about how your data will be used, please head to our information page - How The UK Mito Patient Registry uses your data.