Abstract

The article published by Bebo et al. 1 in this issue of the Multiple Sclerosis Journal addresses the currently proposed Roadmap to cure multiple sclerosis (MS) and outlines three strategic and intuitive pathways; Stop, Restore, and End. Each pathway targets a different aspect of the disease and its treatment, providing a comprehensive approach. In addition, the authors propose a series of objectives to cover each of these three pathways. The current document is an update from the Roadmap established in 2022. 2
The
Complementing the strategic pathways, a second article published in this issue identifies 2346 MS research projects funded between 2021 and 2023 by governments and non-governmental organizations (NGOs) through comprehensive surveys and available online government databases. 3 Projects involved a total of 16 NGOs and 18 government databases, revealing a total of $1.5 billion in funding. Of this amount, 60% of the projects were assigned to the Stop category, 31% to Restore, and 8% to End, which highlights the emphasis on stopping disease progression as the primary strategy to face MS. In addition, different funding allocation was observed between government funding bodies and NGOs: while the first prioritized fundamental projects the latter primarily invested on clinical studies.
The two studies highlight the importance of improving coordination in international research for a more efficient distribution of funding to achieve their main objectives.
The International Progressive MS Alliance and the global PROMs Initiative are prime examples of global collaboration in combating MS progression and enhancing the use of patient-reported outcome measures.4,5 Recently, the World Health Organization (WHO) added disease-modifying therapies (DMTs) for MS to its Essential Medicines List. 6 This significant achievement would not have been possible without a shared agenda and the collaboration of various partners, led by the Multiple Sclerosis International Federation (MSIF). Key contributors included the International Progressive MS Alliance, National MS Societies, ECTRIMS, patient advocacy groups, pharmaceutical companies, and MS experts worldwide, who reviewed all DMTs and made recommendations. Including MS DMTs in the Essential Medicines List is a crucial step toward improving the lives and outcomes of people with MS.
More transparency in current sources of funding is essential to identify opportunities for collaboration. Transparency allows researchers to understand where funds are being allocated and helps to avoid duplication of efforts, ensuring that resources are used efficiently. Moreover, it can help identify gaps in funding, directing attention to areas that may be underfunded but crucial for comprehensive MS research. It is important to note that Bebo et al. 3 exclude contributions from the pharmaceutical and biotech sectors, playing a significant role in MS research and development, and often driving innovation through the development of new drugs and therapies. Greater transparency in research funding from all sectors, including pharma and biotech, is essential. Therefore, this comprehensive view of funding can help identify new opportunities for collaboration and ensure that efforts across different sectors are aligned and mutually reinforcing.
One of the critical barriers to accelerating MS research is the issue of data sharing agreements (DSAs). 7 DSA focuses on the collaborative use of data, including detailed provisions on data usage, access, confidentiality, and compliance with ethical and legal standards. Many international collaborations face delays of months or even years due to complex DSA which significantly slow down the pace of research, as data are essential for developing and testing new treatments or hypotheses. Lowering barriers to data sharing is therefore crucial. This can be achieved by developing standardized DSA and promoting the use of shared databases and repositories with a minimal data set to facilitate faster and more efficient data sharing. Moreover, data transfer agreements (DTA) are based on the secure and compliant transfer of data as well as shared legally and ethically across borders. Streamlining the approval processes and harmonizing regulations can help reduce the time and effort to set up these agreements, allowing researchers to focus more on their work rather than on overcoming administrative hurdles.
The need for more stable funding is another critical factor highlighted by recent developments. Governments are more committed to long-lasting projects than NGOs do, such as epidemiological registries, maintenance of biobanks, and so on. An example of the need for continuous flow of investment in long-term studies is the MS PATHS (Multiple Sclerosis Partners Advancing Technology and Health Solutions), an innovative approach involving Patient-Reported Outcome Measures (PROMs) collected during daily practice and correlated with magnetic resonance imaging (MRI) and biological samples. 8 This project was a fantastic example of collaborative research pooling standardized real-world data across multiple institutions and countries. Unfortunately, this pharma-driven research was abruptly stopped before significant outcomes were achieved. Such interruptions can severely hamper progress, as long-term projects are essential to understand the impact of new therapies on more long-lasting neurodegenerative processes such as progression independent of relapse activity (PIRA), the impact of therapies on progression, or therapy de-escalation approaches. Ensuring continuous funding is therefore vital to support long-term studies and realize their potential benefits.
Rich regions such as Europe and North America currently have the largest number of MS projects. While this concentration of research in wealthier areas can drive significant advancements, it also highlights the need for a more balanced global approach. There is a risk that less-affluent regions may be left behind, missing out on critical research developments that could benefit their populations. Therefore, an effort of solidarity seems necessary, with a greater commitment and support from wealthy countries to those with more economic difficulties to ensure equity of opportunities in MS research across countries. 9
In conclusion, the strategies outlined in both articles published in this issue of the Multiple Sclerosis Journal provide a clear and comprehensive approach to tackling MS from multiple angles. The complementary survey highlights the current funding landscape and stresses the importance of international collaboration and transparency in funding. Addressing the barriers to data sharing and ensuring sustained funding are critical steps toward accelerating MS research. By focusing on these areas, we can drive significant advancements in the quest to cure MS, ultimately improving the lives of those affected by this debilitating disease.
Footnotes
Data availability statement
Data sharing not applicable to this article as no datasets were generated or analyzed during the current study.
Declaration of Conflicting Interests
The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: C.C. has no disclosures. M.T. has received compensation for consulting services, speaking honoraria and research support from Almirall, Bayer Schering Pharma, Biogen-Idec, Genzyme, Immunic Therapeutics, Janssen, Merck-Serono, Novartis, Roche, Sanofi-Aventis, Viela Bio, and Teva Pharmaceuticals. Data Safety Monitoring Board for Parexel and UCB Biopharma, Relapse Adjudication Committee for IMCYSE SA.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
