PREFER - Including the patient voice in drug development

PREFER is a patient-focused project under the Innovative Medicines Initiative (IMI). It aims to research patient perspectives to help inform the development of regulatory guidelines for new medicines. The study is particularly interested in patient views regarding the potential risks and benefits of medicinal products.

As part of the PREFER project, The Lily Foundation, MDUK and Newcastle University are collaborating in a study exploring the health priorities of patients, and their views on the risks and benefits of certain real and hypothetical treatments. At Lily, we are specifically interested in hearing from patients affected by mitochondrial disease and their caregivers.

What is this study about?

We want to know what people with mitochondrial disease think about different treatments and what 'trade-offs' they might be 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 information will be used to help pharmaceutical companies to design more patient-centric treatments and clinical trials, so your input will be really valuable in shaping future research.

Who can take part?

This study is designed for patients with mitochondrial disease and their caregivers. Participants must be 18 years or older, with no previous diagnosis of stroke-like episodes or dementia.

What is involved in taking part?

We have already conducted a number of face-to-face interviews and focus groups at Patient Information Days. If you missed out on these, you can still contribute via an online survey, which is scheduled for circulation in early 2020.

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 to download a 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.