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.
Keep up-to-date with the latest research news
A brief overview of the fascinating history of Multiple Sclerosis, from the first known case dating back to the 14th century
‘Making Ireland the Best Place to do Multiple Sclerosis Research’ Report Sets Out Next Steps for the Improved Access to Treatments and Novel Therapeutics To mark World MS Day on 30 May 2018, MS Ireland, supported by Novartis, will launch a new report which is intended to help create an MS research landscape that will put Ireland at the forefront of MS research, innovation and therapeutic application.[i] The report aims to support researchers and provide people with MS and the public with a better understanding of the research process and ongoing research. Some of the recommendations include the establishment of an MS Research Community, improved data and information sharing, greater involvement of people living with MS, potential funding models, and improved dissemination of research findings. The community will help overcome obstacles to research such as gathering samples, establishing a biobank and a patient register. The report defines a number of key asks as follows: Creation of a Facebook Workplace platform where researchers can contact each other, share information and seek opportunities for collaboration; Establishment of a Public Patient Involvement (PPI) network of people with MS who researchers can contact for assistance with designing studies and grant applications; Raising awareness with researchers that MS Ireland is available to partner on funding applications; Seek opportunities with academia and industry to establish an MS registry; Increasing state investment in medical research, including increasing funding for the Medical Research Charities Group and the Health Research Board Joint Funding Scheme for medical research charities; Establishment of an MS patient registry and the development of a national policy framework and infrastructure for the development and maintenance of patient registries; Prioritising implementation of The Health Information & Patient Safety Bill and The Human Tissue Bill. “Given the prevalence of MS here, Ireland should be leading the way in MS research. The report launched today gives us a blueprint of what needs to be done,” says Ava Battles, CEO of MS Ireland. “As a first step, we want to establish an MS research community collective to bolster Ireland’s current research strengths to obtain more funding and improve research visibility. While the top priorities in MS research are currently being addressed, this could be done better if the MS community addressed them as a collective.” Dr Claire McCoy, RCSI, said, “Research offers people living with MS real hope for improvement both in their treatment but also in their quality of life. I am delighted to support MS Ireland in speaking at their public meeting that will help bring people up to date with progress that is being made. The report also lays out a clear pathway that will help to overcome some of the issues that have been faced and I would urge people working in the treatment of MS to get involved as the recommendations are rolled out.” Commenting on the launch of the report, Loretto Callaghan, General Manager & Country President, Novartis Ireland said, “We are committed to working with MS Ireland to help raise awareness on the importance of research. Research plays a major role in progress so understanding the barriers that exist is the first step in devising a plan that will help to overcome these issues in the future. We believe that Ireland can become a leader in MS research and look forward to collaborating further with MS Ireland to deliver the recommendations of the ‘Making Ireland the Best Place to do Multiple Sclerosis Research’ report.” This report was compiled following a meeting with a mix of stakeholders interested in MS research in Ireland, including patients, doctors, scientists and nurses and was facilitated by Novartis Ireland in November 2017.
MS Research Explored Please join us on World MS Day Wednesday, 30th May 2018 for a research information event in Tercentenary Hall, Trinity Biomedical Sciences Building (TBSI), Pearse Street, Dublin 2 @ 6.00pm - 8pm Agenda/Speakers - Launch of MS Research Report - How Clinical Research is Bringing Us Closer to Understanding MS: Professor Orla Hardiman, Trinity College Dublin - The Patient’s Voice – Bringing Us Closer to Research: Joan Jordan, EUPATI Graduate, European Patients’ Academy - Bringing Us Closer to Research in Ireland: Dr Claire McCoy, Royal College of Surgeons Ireland Can't make it to the lecture? Don't worry - the presentations will be streamed live on the day of the event, you can access the link below on Wednesday, 30th May at 6pm https://webcastireland.com/w/live-broadcasts/ originally published 1st May 2018
Kiss Goodbye to MS for research into Multiple Sclerosis and vital services Multiple Sclerosis Ireland, with the support of TV presenter Lisa Cannon and two young women living with MS, Rosie McCormack and Sara-Jane Tracy, is calling on people to help Kiss Goodbye to MS raising funds for MS research and essential services. Throughout the month of May, supporters are asked to ‘go red’ and to Wear, Dare and Share: to wear red or hold a ‘red day’, dare to get sponsored for an MS Ireland sky dive, and share with friends and family to spread the word. For more information visit www.kissgoodbyetoms.ie Kiss Goodbye to MS is about raising awareness of Multiple Sclerosis and supporting MS Research as well as funding vital services that reduce the impact of MS including physiotherapy, counselling and newly diagnosed seminars. MS Ireland will hold the first MS Research Ball on Saturday, May 26th 2018 as well as a Red Lab Coat Day in research laboratories around the country, reinforcing the research message for Kiss Goodbye to MS. TV presenter Lisa Cannon is proudly supporting the Kiss Goodbye to MS campaign: "I'm delighted to be part of this important cause to raise funds for MS research and services, to help people living with MS. Three times more women than men are diagnosed with MS, with most being diagnosed between the ages of 20 and 40. Please go red this May and wear, dare and share to show your support." Kiss Goodbye to MS is helping to increase the number of countries fundraising for research. In 2017, 8 countries took part raising more than € 1 million. In 2018 12 countries are taking part with the aim to raise more than €1.2 million to fund research and services . Ava Battles, Chief Executive, MS Ireland comments: "While each country embarks on their own unique Kiss Goodbye to MS journey, the global MS community is more collaborative than anyone has seen before. MS Ireland is delighted to be involved in launching this important campaign for the third year running in Ireland to help raise funds for MS research and essential services for more than 9,000 people with Multiple Sclerosis. It's an important campaign for people and family members affected by MS. The campaign is also, significantly about hope, enabling and empowering people with MS to live the life of their choice to their fullest potential.” Rosie McCormack, 27, and Sara-Jane Tracy, 31, both living with MS are part of a squad of MS ambassadors to the campaign. They are among more than 9,000 people living with MS, facing the challenge MS every day. Help Kiss Goodbye to MS WEAR Raise funds and awareness by wearing something red or hold a red day event at work or in the community. Put on your favourite red lipstick, pucker up and share a kiss on your social media platforms using the hashtag #KissGoodbyeToMS. Please text KISS to 50300 to donate €4 and nominate your friends and family to take part. If you don’t fancy wearing red lipstick, any red item of clothing or accessory will do! DARE Dare yourself or someone else to do something out of your comfort zone and get sponsored for it. This year we’re daring people to do the MS skydive! But sky dives aren’t for everyone so please feel free to do a different dare! www.kissgoodbyetoms.ie/upcoming-events/ SHARE Share the message with friends and family to spread the word.
Promising trial results published for potential new therapy for secondary progressive MS The EXPAND study shows new treatment, siponimod, is the first potential therapy to meaningfully delay disability in people with secondary progressive MS Results demonstrate siponimod also had beneficial effects on relapses and disease activity, including brain volume loss (brain shrinkage) Pharmaceutical company Novartis today announced that the full results from the EXPAND study of siponimod (BAF312) in secondary progressive multiple sclerosis (SPMS) were published in medical journal The Lancet. These pivotal results show significant reductions in the risk of three and six-month disability progression with siponimod versus placebo and favourable outcomes in other relevant measures of MS disease activity. If approved, siponimod would be the first disease-modifying therapy to delay disability progression in typical patients with secondary progressive MS, including many who had reached a non-relapsing stage and high level of disability. Novartis plans to file for a European license in 2018. “Currently, Irish people with secondary progressive MS have limited treatment options. This new data, published today, shows that siponimod delays the advancement of disability for these patients, representing an important milestone in MS care”, says Professor Orla Hardiman, Consultant Neurologist, Beaumont Hospital and Professor of Neurology, Trinity College, Dublin. “These data are all the more impressive when considering that the majority of patients already had advanced disability when starting treatment on the study”. Siponimod is an oral selective modulator of sphingosine-1-phosphate (S1P) receptor subtypes one and five (S1P1 and S1P5). Full data from EXPAND show that siponimod reduced the risk of three-month confirmed disability progression by a statistically significant 21% versus placebo, efficacy was consistent across many sub groups. Other clinically relevant endpoint data show that siponimod, when compared to placebo: Reduced the risk of six-month confirmed disability progression by 26% Slowed the rate of brain volume loss (brain shrinkage) by 23% Limited the increase of brain lesion volume by approximately 80% Reduced annualised relapse rate by 55% Did not show a significant difference in the Timed 25-Foot Walk test and MS Walking Scale Demonstrated a safety profile that was overall consistent with the known effects of S1P receptor modulation “Novartis is dedicated to advancing MS research and pioneering solutions for people living with secondary progressive MS – a complex, debilitating disease,” said Danny Bar-Zohar, Global Head, Neuroscience Development for Novartis. “The pivotal EXPAND data provides patients, and the medical community alike, with hope that a much needed, safe and effective treatment option is on the horizon for secondary progressive MS, for which treatment options are scarce. We look forward to continuing to work with regulatory agencies to make siponimod available for these patients as fast as possible.” Novartis has initiated a scientific advice consultation with the European Medicines Agency (EMA) and, pending its outcome, plans to file for a license in Q3 2018. If siponimod is granted a license by the EMA, the company will then need to apply to the National Centre for Pharmaco-economics (NCPE) and the HSE to see if the drug will be approved for reimbursement in Ireland. Read more about the process by which new medications are made available in Ireland MS Ireland, along with other patient organisations, have strong concerns about current problems and delays in the system for making new and innovative medications like siponimod available in Ireland. MS Ireland have contributed to two round-table discussions and subsequent reports produced by the Irish Platform for Patients Organisations, Science and Industry (IPPOSI) and the Medical Research Charities Group (MRCG), which detail the problems with the system and make recommendations for change. Read the ‘Drug Iceberg’ reports. Get in touch Please contact Harriet Doig, Information, Advocacy and Research Officer, for further information on MS Ireland’s work on access to medicines – harrietd@ms-society.ie
Young adults lived experiences and perceptions of parental MS and how it impacts on them. Niall Moloney, 4th year Occupational Student, NUI Galway is looking for participants to engage in a research study. Who can participate? The participants for this particular study are children of people with MS who are aged between 18 and 30 years. Aim of study The study seeks to explore young adults lived experiences and perceptions of parental multiple sclerosis and how it impacted and/or impacts on them. It is anticipated that this study will inform service provision regarding areas in which young adults who experience parental MS may require support. What do I have to do? Young adult participants aged between 18-30 years, will be asked to engage in short individual interviews and complete a demographic questionnaire. We are asking if you have children within this age group who might be interested in participating in this project and if so, would you pass on this information. How to get involved If they are interested please contact Niall directly at n.moloney6@nuigalway.ie Further reading Download participants invitation Download participants Information sheet Download summary of project Download letter from research supervisor Download Interview schedule
World MS Day brings the global MS community together to share stories, raise awareness and campaign with and for everyone affected by MS. Getting involved is easy! See how you can make a difference!
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20 June 2018: Physiotherapist designed and led exercise programme for people with MS.
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