Thank you to everyone who has participated in our research collaboration studies!

Thank you to everyone who has participated in our research collaboration studies this year. ‘Supporting Transitions to Adulthood Resources (STAR) Project’ and ‘The Lived Experience of Health-Related Quality of Life for Adults with Muscular Dystrophy’ have closed. We will publish reports on our website once the results have been analysed.

Opportunities to participate in research:

The psychosocial needs of adults living with neuromuscular conditions

This is a collaborative study with University College Dublin, School of Psychology.

It is the largest national neuromuscular-related study this year and we value the inclusion of as many participants as possible, so that the results will reflect the needs of those living with a neuromuscular condition in Ireland.

To participate, over 18 years of age with a muscular dystrophy or other neuromuscular condition can complete an online survey that is anticipated to take between 15-20 minutes.

This study is due to close in September.

Full details about this study are available here. https://eu.surveymonkey.com/r/5WZ7G8W    

CMT biomarker study

Ulysses Neuroscience, in collaboration with neurologist Dr Sinéad Murphy from Tallaght University Hospital, are conducting a significant research study to identify new biomarkers for CMT1A. This study is crucial as biomarkers are important in the early detection and monitoring of the condition and could lead to improved treatments for those with CMT1A.

Participation requires a single visit to Tallaght University Hospital for a standard blood draw and clinical assessment, which is conducted in one day to minimise inconvenience to participants. Full details about this study are available here[DM1] .

 [DM1]https://www.mdi.ie/all-news-articles/new-study-on-biomarkers-for-charcot-marie-tooth-type-1