What is this trial about?

The Clinical Trial Team at the Wellcome Centre for Mitochondrial Research (WCMR) are looking to gather evidence on how carers of those living with mitochondrial disease could be better supported. The study aims to capture the impact, challenges and unmet needs that unpaid and bereaved caregivers face.

Who can take part?

Participants should meet the following criteria:

• Be 18 years or older, living in the UK or the Republic of Ireland and
• Currently caring for a person aged 16 and over, with a diagnosis of Primary Mitochondrial Disease (PMD) or have past experience (in the past 10 years) of caregiving for a person who was age 16 and over, with a diagnosis of PMD and
• A current (or bereaved) spouse, partner, parent, legal guardian or any other ‘significant other’ in a patient-caregiver relationship; not formally employed* to provide care (*not including Carer’s Allowance)

Who will benefit?

This study could potentially benefit both patients and caregivers in the future if carers can be better supported.

How do I find out more?

Please complete the survey by visiting this link. This is an anonymous survey that should take 20-30 minutes to complete. Following completion, you’ll be provided with information about an optional follow-on online focus group.

If you have any queries, please contact the WCMR Clinical Trial office at [email protected] or see a member of your clinical team.