EXPLORE
Research type
Research Study
Full title
Exploring the EXperience of Patients and Caregivers Living with mitOchondRial Stroke-Like Episodes
IRAS ID
314820
Contact name
Yi Shiau Ng
Contact email
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Mitochondria are the ‘batteries’ of the cell that provide the energy we need. When they are faulty, it leads to mitochondrial disease.
Mitochondrial disease has many causes and symptoms.
Some people with mitochondrial disease experience Stroke Like Episodes (SLEs). They affect the brain causing symptoms like those seen in a stroke.
SLEs are serious events. They involve seizures and cause permanent damage to the brain. Those affected have repeated episodes throughout their lives.
SLEs cause problems with memory, understanding, and speech (we call these ‘cognitive’ processes). They also cause problems with movement and balance. As more SLEs happen, these problems get worse.
We can treat some SLE symptoms but currently have no way to stop them happening or fix the damage they cause.
It is important that SLEs are recognised as early as possible when they happen. This allows medication for the seizures to be given and can help reduce damage to the brain.
Guidelines about recognising and treating SLEs are available for healthcare professionals. However, we do not currently have guidelines for people who experience SLEs and don’t know much about their, or their caregivers, experiences.
This study is run by the Wellcome Centre for Mitochondrial Research, Newcastle University. It will take place at Newcastle University.
This aim is to collect information about patient and caregiver experiences of SLEs. This will help us understand what improvements to current treatments are needed, and what patient/caregiver guidelines would be useful. It will also help us design future research studies.
We will invite a small number of people (approx. 20 adults) affected by, or who care for someone with, SLEs, to attend a focus group and/or interview.Participants will be asked about their experiences of SLEs including treatments received and how/if they are able to recognise when SLEs are happening.
REC name
East Midlands - Leicester Central Research Ethics Committee
REC reference
22/EM/0166
Date of REC Opinion
7 Oct 2022
REC opinion
Further Information Favourable Opinion