Collaborating To Accelerate Research Progress
FAIR Guiding Principles for data sharing and MS Data Alliance are lowering some of these barriers. Changes in policy will help overcome these barriers and speed up progress." c-nmssatomrichtext_nmssatomrichtext-host=""> Continued progress toward MS cures requires working together with large amounts of data (called datasets) from centers around the world. Data is critical in examining the impact of MS on various populations and putting together effective scientific studies and treatment plans. But gathering large datasets takes a lot of time and energy. It’s quicker and more resourceful to share data.Currently, research is often slowed or stopped due to challenges with data sharing such as:- Limits on data sharing based on undue concerns for participant confidentiality and privacy
- Lack of systems and/or resources to support data sharing
- Technical considerations including data security, administration, organization and storage
- Researchers’ reluctance to share data
International Progressive MS Alliance - Patient Reported Outcome for Multiple Sclerosis (PROMS)
Resources available to fund MS research are limited. It makes sense to coordinate research to focus on the opportunities with the greatest potential.Coordination can also help reduce redundancies and expenses. Improved coordination of shared resources such as biobanks can have a major impact. For instance, MS funders are helping to achieve groundbreaking results through global collaborative efforts like:
The global MS community must commit to sustained research funding to ensure that ongoing projects are completed and new ideas are being generated.A lack of long-term funding can shut projects down before they have results. This wastes money and delays progress. Also, if researchers aren't certain that they have enough funds to complete a study, they might hesitate to even begin. New studies are critical for advancing science.Global funders can ensure continual support by pooling resources. Funds should only be distributed when they are available for the life of the project.
As we achieve results, it will be important to consider how we share them and how they impact our next steps. We have to make sure that even the most sophisticated new technologies are available to people living with MS.Policymakers and funders should be engaged very early in the development stage. Funders should consider using some resources to understand and overcome barriers to access during the early stages of the projects they support.
The global MS movement needs to engage people with MS at every level of research. A lack of diversity in MS research and clinical care threatens breakthroughs.The MS movement must do a better job of diversifying the MS research and clinical workforce. One way to do this is through the development of fellowships and/or early career awards with underrepresented scholars in mind.Researchers and funders should also engage people from underrepresented groups in research studies. Diversity in research studies will:
- Enhance the quality of the results
- Reveal important effectiveness and safety information
- Discover population-specific differences in the history of disease and response to therapy
- Ensure better treatments and cures are developed for everyone living with MS
- Clear structure
- A plan for deciding which initiatives take priority
- Balancing funding of longer-term projects with innovation and investigator-initiated ideas
- Defined milestones and ways of measuring progress
By working together strategically, global researchers avoid duplicating each other’s efforts. This also provides more possibilities for funding their projects, which leads to faster developments.In 2024, the Society led the effort to conduct a global landscape analysis. This landscape analysis highlights the current distribution of MS research investment between topics and begins to suggest where the MS community should focus.Collaboration improves knowledge, treatments and health outcomes, and accelerates cures for MS.Keys to successful collaboration include:
- Clear structure
- A plan for deciding which initiatives take priority
- Balancing funding of longer-term projects with innovation and investigator-initiated ideas
- Defined milestones and ways of measuring progress
