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.