Exploring the EXperience of Patients and Caregivers Living with mitOchondRial Stroke-Like Episodes (EXPLORE)

The EXPLORE study is currently open at Newcastle University. You can take part if:

  • You have been diagnosed with mitochondrial disease and Stroke- Like Episodes (SLEs); Or,
  • You live with, or have cared for, someone who has been diagnosed with mitochondrial disease and SLEs .

The study involves taking part in a group discussion (focus group) about your experiences of SLEs. See below for further details.

What is this study about?

In the EXPLORE study we want to collect information from people with mitochondrial disease who experience Stroke-Like Episodes (SLEs).

We also want to collect information from people who live with, or have cared for, people who experience SLEs.

We want to find out about their experiences of SLEs and the treatment they received for these.

Who can take part? 

You can take part in the EXPLORE study if:

  • You have been diagnosed with mitochondrial disease and Stroke-Like Episodes; Or,
  • You live with, or have cared for, someone who has been diagnosed with mitochondrial disease and Stroke-Like Episodes.

What’s involved in taking part?

The study involves taking part in a Focus Group (small group discussion) about your experiences of SLEs. This will take place at Newcastle University, or online.

Each Focus Group will last around 3 hours.

Travel to Newcastle University will be arranged/reimbursed and you will receive a gift voucher as a token of our appreciation of for taking part.

Are there any risks?

Talking about your experiences of SLEs could be difficult. It is possible that some of things discussed could be upsetting. Before the Focus Group we will show you the type of questions we will ask so that you are prepared. You will also be free to take a break or leave a Focus Group at any point.

If, during the Focus Group , you want to stop, or take a break you will be able to do so.

Who will benefit?

We cannot promise that taking part in the study will help you personally. However, some people find it helpful to share their experiences with others.

We hope the study will help us identify the barriers people currently face when accessing medical care for SLEs. It may also help us understand the psychological and social impacts of mitochondrial disease and SLEs.

How do I find out more?

If would like further information about participating in this study (as someone who experiences SLEs, or as someone who cares for or has cared for someone with SLEs) please contact the study team on 0191 208 3105 or email: mito.studies@ncl.ac.uk

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