We would like to hear from people living with myotonic dystrophy

Published Date
Jenny Sharpe
PREFER Patient Preferences logo from website

As part of the IMI PREFER project, we are helping to organise a focus group for people with myotonic dystrophy and their caregivers.

PREFER is an EU-funded project that aims to establish how patients’ preferences should be collected during drug development and how this information can support decision-making by regulators and HTA bodies.

Patients are included at every level of the PREFER project. The aim of this focus group is to gather your opinions on how, when and why patients’ preferences should be asked for and used in the development of medical products. More information can be found on this information sheet.

The focus group is taking place in London and will not require more than 1.5 hours of your time. Specific details are as follows:

  • When is it?

Saturday 30 September, 11am

  • Where is it?

Hilton London Bankside, 2-8 Great Suffolk Street, London SE1 0UG

  • Who is it for?

People with a diagnosis of myotonic dystrophy who are aged 18+ OR caregivers of someone who has myotonic dystrophy.

  • Will my costs be covered?

Feasible travel costs will be reimbursed.

  • How many people are you looking for?

We would like to have 6-10 participants in the focus group.

  • How do I take part?

If you’re interested in taking part in the focus group, please get in touch with Dr Jenny Sharpe (j.sharpe@musculardystrophyuk.org; 02078032885) or Dr Nikoletta Nikolenko (Nikoletta.nikolenko@newcastle.ac.uk; 07870517410).

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