Mitochondrial Disease PSP Survey

Who is this survey for?
We would like you to complete this survey if:
  • you have mitochondrial disease;
  • you are a carer for someone with mitochondrial disease (either now or in the past);
  • you are a healthcare professional with relevant experience
If you are a family member of a patient or carer, we would also like to hear from you.
 
Introduction
Despite growing research activity in the UK and across the globe, many questions about mitochondrial disease have not been answered. Resources for research are limited. To help future research target the most important areas, people that pay for research must understand what patients, carers and healthcare professionals see as the most important questions.

What is the aim of this project?
Priority Setting Partnerships (PSPs) are set up to help find the most important questions about diseases. This project focuses on mitochondrial disease in children and adults.

This project will ask about:
  • causes of mitochondrial disease, how it can start and change over time;
  • caring for people and treating mitochondrial disease;
  • managing day to day life.
The results of this project will help shape the future of mitochondrial disease research in the UK and beyond. The project will be independently overseen by The James Lind Alliance and managed by Genetic Alliance UK.

The project consists of three stages, and you are welcome to take part in any of these:
1) This survey, which is collecting questions from patients, carers and healthcare professionals.
2) A second survey asking people to rank the questions in order of importance.
3) A workshop to agree the final ‘top 10’ most important questions.

Taking the survey
The survey can be completed online. The survey can also be completed on paper, and returned by post. The paper copy can be downloaded here

Please tell us as much as you can about yourself, and add any questions about mitochondrial disease that you can think of.

Your data
You do not need to include any information that will identify you personally. If you choose to leave your email address to receive updates, we will store this information in line with the Data Protection Act 2018 and will not share it outside Genetic Alliance UK. We will remove any identifying information from your responses before they are analysed.
Your responses and email address (if you include it) will be permanently deleted 3 months after the results of the PSP are published.

Further information
Please contact the PSP Coordinator for further information at membership@geneticalliance.org.uk or you can phone the office at 020 7831 0883.
Further details are to be found on the PSP website here

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