PREFER project

PREFER is looking for volunteers living with mitochondrial disease (patients and caregivers).

As part of the IMI PREFER project, The Lily Foundation, MDUK and Newcastle University are collaborating in a study exploring patient health priorities and their views on risks and benefits of potential treatments. For the purpose of this study, we are interested in the voice of patients and caregivers of patients affected by mitochondrial disease.

What is this study about?

We want to know what people with mitochondrial disease think about different treatments (real treatments or hypothetical ones) and what trade-offs they are willing to make. A trade-off is the act of balancing a negative against a positive, for example the side-effects or risks of a treatment against the benefits it may offer.

This sort of information will help pharmaceutical companies to design more patient-centric treatments and clinical trials. So your input into this study is really valuable for shaping future research.

Who can take part?

This study has been designed for patients and caregivers of patients with mitochondrial disease. Participants have to be 18 years or older and with no previous diagnosis of stroke-like episodes or dementia.

What is involved in taking part?

The study will be conducted in two phases: 1) a set of face-to-face interviews and focus groups and 2) an online survey aimed for a large sample.

1. Face-to-face interviews will be about 45 minutes and will take place between March and April 2019.

2. The focus groups will be about 1.5 hours long and will take place on:

  • Friday 15 March, London
  • Saturday 30 March, Nottingham
  • Saturday 6 April, Newcastle

3. The online survey is expected for circulation by September-December 2019.

*A store-credit voucher will be given as a thank you for taking part.

How do I find out more?

If you’re interested in taking part in this study or want to know more about the study, please get in touch with [email protected]

For more information, click here: participant_information_sheet_fgd_v0.1.pdf

The PREFER project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 115966. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.