An opportunity to take part in a study on a rare genetic condition.
The date given above is the deadline to register an interest in taking part and not the date of the study. Appointments will be arranged between the participant and the researcher.
This study has followed up a number of patients with a rare inherited muscle condition (limb girdle muscular dystrophy type 2I). The study is looking at how best to measure progression of the condition using MRI to look at muscles that make you move (skeletal muscles) and the muscle of the heart.
Participants were invited to undergo MRI scans and physiotherapy assessments in 2010 and a second one in 2016. The part of the study which compares MRI and physiotherapy over time is now complete and researchers are focussing on how MRI can be used to look at the heart muscle.
One of the problems of showing heart scarring in individuals with this particular muscle condition is that the scarring isn't concentrated together in one area (as seen in a heart attack) but is instead spread out throughout areas of the heart (called diffuse). The researchers are using an MRI-based method to measure scarring within the heart which has potential to detect and quantify how much scarring is in an area. They are currently recruiting control volunteers to undergo the scan of the heart to compare to the participants with the condition.
The aim of this study is to find out how best to measure progression of the condition using MRI.
There is no upper age limit for this study.
Participants will first be contacted by telephone to discuss the project and sent a copy of the patient information leaflet.
You will then be invited to attend the centre. A small blood test will be taken whilst inserting a cannula (also referred to as a 'drip'). Participants will then undergo the MRI scan for approximately 50 minutes and will be asked to hold their breath for short periods.
Towards the end of the scan a standard dye is given using the cannula which will show up the heart on the MRI scan. The scan will then continue for another 20 minutes.
The whole visit should last no longer than 2 hours.
The appointment will be arranged between yourself and the researcher.
The researchers aim to scan participants in late June and throughout July and August if necessary.
The study will take place at the Newcastle Magnetic Resonance Centre, Campus for Ageing and Vitality.
Travel expenses will be reimbursed.