MS Ireland
Informing, Supporting and Caring for the MS Community
MS Ireland helps researchers with their projects by offering advice, data and access to our MS community. We encourage people with MS to get involved in research that is ethical, appropriately organised by a recognised institution and sanctioned by that research authority.
The projects listed here are for information purposes only. If you choose to get involved in any project you do so at your own discretion. Please read the information provided carefully and make contact with the individual researchers if you have questions
Check out our health professionals section for news and more information.
If you would like help with your research, contact Harriet Doig on harrietd@ms-society.ie or call (01) 6781600.
Shares your tips for living well with MS. #LifewithMS
Research participants needed You are invited to participate in a study that will evaluate the validity of a speech pathology specific questionnaire for persons with Multiple Sclerosis (pMS). In this study, you are invited to complete an online survey. The questions in the survey will include a range of relevant topics such type of MS, voice quality, swallowing, language, and the state of your social and psychological wellbeing. After two weeks, you will be asked to complete some of the questions again. Who is eligible? Aged 18 years or over; Diagnosis of Multiple Sclerosis; English speaking; Ability to complete the questionnaire. What does this study involve for participants? This survey will obtain information about your overall health status and daily routines. This survey will explore the impacts of Multiple Sclerosis disease on areas like swallowing, speech voice and communication. Participating in this survey is voluntary and we appreciate your time when participating. You have the opportunity to win one of two $50 gift vouchers if you complete the two questionnaires. A donation of $2 will also be made to MS Australia for each completed questionnaire, with a maximum of $500. The questionnaire can be found on: https://www.surveymonkey.com/r/SpeechPathologyMS Further reading Participant Informed Consent Form Ethic Approval Get in touch If you want more information on this project, please feel free to contact Dr. Hans Bogaardt at 02 -‐ 9351 9334 or email: hans.bogaardt@sydney.edu.au. A multi‐page Patient Information Statement, describing the study in detail, is available and will be sent to anyone who expresses their interest in this study. The ethical aspects of this study have been approved by The University of Sydney HREC (Protocol no. 2017/197) Discipline of Speech Pathology Faculty of Health Sciences S Block Cumberland Campus C42, 75 East Street, LidcombeNSW 2141 Australia T +61 2 9351 9539 F +61 2 9351 9163 E speech.clinic@sydney.edu.au
Developing new resources Researchers at Trinity College Dublin have developed four short, animated films about multiple sclerosis. They are looking for people living with MS, people who work with them, and their relatives, friends and loved ones to complete short surveys on the films in order to learn from their experiences of the films and to inform the development of future resources for people with MS. The videos and surveys can be accessed at the below links until Monday, July 17th: Video 1: How does MS affect my brain? Survey 1: How does MS affect my brain? Video 2: How does MS affect my cognitive function? Survey 2: How does MS affect my cognitive function? Video 3: What is cognitive reserve? Survey 3: What is cognitive reserve? Video 4: How can I keep my brain healthy? Survey 4: How can I keep my brain healthy? Thank you in advance - your participation will be invaluable in helping them to improve the resources they develop for people with MS.
Highlighting Life with Multiple Sclerosis World MS Day 2017 will take place on Wednesday, May 31st and the theme this year is 'Life with MS', raising awareness of Multiple Sclerosis for thousands of people in Ireland and their families. Aoife Kirwan from Kildare and Maggs O’Riordan Wall from Limerick, both living with MS, are highlighting the challenges of life with MS including MS attacks, mobility issues, cognitive difficulties and the crucial need for increased neuro rehabilitation services. Ava Battles, Chief Executive, MS Ireland comments: “Life with Multiple Sclerosis is greatly impacted by the availability of neurology and neurorehabilitation services and this World MS Day we are calling for an increase in resources for neurology services in Ireland that match the need, ensuring access to care and support on time. Early identification of MS, early treatment with an appropiate medication and timely neurorehabilitation can improve functioning, reduce symptoms, and delay or prevent disability accumulation or deterioration.” How to get involved Events are planned across Ireland to mark World MS Day 2017 including 9,000 Steps for MS which will see supporters running, walking or dancing 9,000 Steps (6.5k) with colleagues, friends or family. Funds raised will directly help in services provision locally, in particular, physiotherapy, counselling and respite at the national MS Care Centre. Share your tips and photos/videos with us on Facebook, Twitter or Instagram for living well with MS. Don’t forget to use the hashtag #LifewithMS MS Ireland, the national organisation providing vital services, information and support to people with MS, will hold a World MS Day event at Leinster House on Wednesday, May 31st to raise awareness of essential neuro rehabilitation services for people with Multiple Sclerosis. Neurology services in Ireland: The number of specialist nurses is significantly below what is recommended for our population with less than half the recommended number of MS nurses Every hospital group exceeds the ratio for consultant neurologists for our population No centre has MRI access for routine referrals in under two months and seven of the eleven neurology centres cannot get access within one year of referral. Lack of access to neurorehabilitation services including therapies such as physiotherapy, occupational therapy and speech and language therapy. Ireland should have nine community neurorehabilition teams. There are currently only three in the entire counry and these are only partially staffed * The source of these statistics is the survey carried out by the Neurological Alliance of Alliance and the National Clinical Programme for Neurology, published in February 2016.
The Effect of Gender Identity on Help-Seeking and Social Support in Male Carers of People with MS Researcher Damien Appleton, Clinical Neuropsychologist from the University of Leicester is asking male carers of people with multiple sclerosis (MS) to complete a series of online questionnaires investigating levels of social support, carer burden, willingness to seek help and attributes related to gender role. Who can take part? Any male over the age of 18 who is a carer of a loved one with multiple sclerosis. Should you wish to do so, you can choose to provide your contact details in the form of an email address to be entered into a draw to win one of four £50 Amazon vouchers. What will I have to do? If you decide to complete this survey, you will be required to complete it in one sitting, which means you cannot save your responses half way through and come back to it later to complete. It should take approximately 30 minutes to complete and your time is greatly appreciated. What will be done with my responses? Your responses will be anonymous and no identifiable information will be included in any reports that are produced with the results of this survey. The responses will be stored securely on a computer that only the research team has access to and all data will be destroyed after 7 years. Should you wish to withdraw at any time, you have every right to do so and you should contact the researchers to request this. Consent: By choosing to complete this survey and submit your results, you are agreeing to the terms above and consenting to your anonymous data to be used in a research report. You are also confirming that you are a male carer of a loved one with MS. Who has reviewed this study? The University of Leicester Research Ethics Committee. If completing this survey causes you any emotional distress, please contact your GP to talk through support options that may be available to you. We thank you again for your time taken to complete this survey. Should you wish to complete the questionnaires in written form, please contact the researchers and this can be arranged. Get in touch Contact Damien Appleton by email damien.appleton@gov.gg
Multi-million pound trial to investigate if statins could become MS treatment The MS Society UK are co-funding the phase 3 trial to test if simvastatin could become a treatment for secondary progressive MS. This phase 3 trial will involve over 1000 people with secondary progressive MS. It began in March 2017 and will take six years to complete. If successful, simvastatin could be among the first treatments licensed for secondary progressive MS. The phase 3 trial will cost almost £6 million. The MS Society UK are funding this research in collaboration with the National Institute for Health Research, the National MS Society (US), the NHS and UK universities. Find out more about the MS-STAT2 trial Phase 2 trial results were published in 2014. Researchers found those taking high doses of simvastatin had better disability scores compared with those taking placebo. Disability was assessed using the Expanded Disability Status Scale. This measures changes in MS symptoms including problems with walking, thinking and swallowing. Simvastatin also reduced the rate of brain atrophy (shrinkage) over two years. This suggests that the treatment could protect nerves from damage in MS. Dr Jeremy Chataway from the UCL Institute of Neurology is leading the research: “This drug holds incredible promise for the thousands of people living with secondary progressive MS in the UK, and around the world, who currently have few options for treatments that have an effect on disability. “This study will establish definitively whether simvastatin is able to slow the rate of disability progression over a three year period, and we are very hopeful it will.” MS Society' UK's Chief Executive Michelle Mitchell says: “We’re incredibly proud to be co-funding the simvastatin trial. This is an absolutely momentous step forward in our quest to find an effective treatment for progressive MS. “More than 100,000 people in the UK are living with MS and this research will offer a huge amount of hope to the majority of them.” Further information Read more about treatments being developed for all types of MS Find out more about the phase 3 trial Read more about simvastatin
Can you imagine the adrenalin rush after jumping out of a plane at 10,000FT? Well wonder no more! Sign up to our Skydive for MS in September 2017 and find out for yourself!
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