Policies and principles
A. Information sharing and quality control
Information sharing is at the heart of this programme. The Alliance will share results, ideas and progress across international borders quickly and efficiently through open online platforms, face-to-face scientific meetings and workshops. The Alliance will make findings freely available for everybody working on MS to develop further and challenge. The impact will be felt not just by researchers funded by the Alliance, but by every researcher working on progressive MS.
The Alliance is putting the framework and funding in place to provide every opportunity to make the discoveries needed to develop treatments, but will be equally successful if the work of the Alliance can drive breakthroughs made elsewhere. The only objective is improving the lives of people with progressive MS.
B. Leadership and project management
The Alliance will provide the leadership and project management required to keep the many parties focused on the primary goals. The expertise of the Alliance members will ensure that the best and most promising research is funded. The global scale and profile of the Alliance will also demand that the research is monitored and delivered to the highest quality standards.
C. Publications and reprints
The Alliance expects that the results of research will be presented at its annual meetings and published in appropriate journals. The Alliance must follow the brand hierarchy agreed by the Executive Committee and be acknowledged in all dissemination materials (including publications, scientific exhibits, scientific presentations, press releases, etc.) related to research supported in full or in part by the Alliance.
D. Open access to research and clinical data sharing
The Alliance is committed to open and unrestricted access to results of Alliance-funded research. The Alliance believes that the publication of results allows the outputs from Alliance funded research to be publicly available – not just to other researchers, but also to potential users in business, charitable and public sectors, and to the general public.
E. Scaling up investment and cost effectiveness
The aim of the Alliance is to radically expand the funds available for research into progressive MS by connecting international investment with the very best science – wherever it originates and whoever is taking it forward.
By working as a coordinated and open group, the Alliance will also ensure that research is not duplicated and that successful or compelling results lead to further investigation and powerful collaborations. In addition to the increased potential for success, this will also help make the Alliance’s work a cost effective investment.
F. Research involving human subjects or animals
Studies involving human subjects, including research on identifiable human material and data must comply with the ethical principles for medical research involving human subjects described in the Declaration of Helsinki.
The Alliance will not support research involving human subjects without prior receipt of written approval of the specific research proposed from the awardee institution’s Human Institutional Review Board (IRB) or Ethics Committee (the institutional independent review committee charged with overseeing studies involving humans). This approval must be received by the Alliance on an annual basis during the funding term of the research award.
The Alliance supports funding of biomedical research using all types of human cells. The Alliance also supports adherence to the strictest ethical and procedural guidelines for the use of these cells. Research involving human cells and/or tissues must be performed in accordance with all local, regional and national regulations.
For research involving animals, written approval from the awardee’s Institutional Animal Use and Care Committee (or equivalent) must be received by the Alliance prior to the release of any funds. This approval must be received by the Alliance on an annual basis during the funding term of the research award.
All biomedical research which involves the use of animals must adhere to the laws and guidelines for use of animals in scientific experimentation imposed by the country in which the experiments are conducted.
G. Indemnification policy
Funding is awarded to institutions by the National MS Society (USA) on behalf of the Alliance. The National MS Society and members of the Alliance are not responsible for any claim, judgment, award, damages, settlement, negligence or malpractice arising from the research or investigation related to these awards. The awardee and Institution acknowledge responsibility for the conduct of research or investigations related to this award.
H. Invention policy and procedure
- The Alliance invention policy must be aligned with providing benefit for people with MS.
- Responsibility for Intellectual Property (IP) management should remain with the funded organizations, provided they are in a position to adequately protect the inventions. The Alliance is, however, committed to working with organizations to assist in commercialization, as needed.
- The Alliance is dedicated to ensuring adequate protection of IP to enable commercialization of research funded by the Alliance.
- The invention policy needs to encourage further investment and make sure that inventions are properly exploited.
- The Alliance is committed to an aspirational goal of open data sharing while balancing the need to ensure protection for potential commercialization.
The National MS Society will manage intellectual property matters arising from RFAs on behalf of the Alliance.