PREFER is looking for volunteers living with myotonic dystrophy or mitochondrial disease

Published Date
20/02/2019
Author
Jenny Sharpe
Category
Research

As part of the IMI PREFER project, we’re working with Newcastle University to conduct focus groups for people with myotonic dystrophy type 1 or mitochondrial disease, as well as their caregivers.

We want to know what people with these conditions think about different treatments (real treatments and 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 risk of a treatment against the benefits.

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.

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

A £15 voucher will be given as a thank-you for taking part.

If you’re interested in taking part in this study, please get in touch with Dr Cecilia Jimenez Moreno at Cecilia.Jimenez-Moreno@newcastle.ac.uk or by calling 01912083105.

Further information

Read the study information sheet

Find out more about PREFER

Get in touch with our Research Line

 

Disclaimer: This news item and its contents reflects the PREFER project’s view and not the view of IMI, the European Union or EFPIA.

Acknowledgement: The Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle (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.

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