FAQs about Society Funded CCSVI Grants - National Multiple Sclerosis Society

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FAQs about Society Funded CCSVI Grants

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Is the National MS Society funding research into CCSVI in MS?

Yes. The National MS Society, in collaboration with the MS Society of Canada, is pursuing follow-up research into how CCSVI might be involved in the MS process. Investigators from around the world applied for grants to explore this lead. These applications underwent an accelerated review process by a panel of international experts in both MS and vascular diseases and an announcement about a commitment of $2.4 million for new CCSVI grants was made in June 2010.

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How were research proposals received by the Societies reviewed?

All research applications underwent a rigorous expedited review process by an international review panel that included experts drawn from all key relevant disciplines including: neuroradiology, neurovascular imaging, MS imaging, vascular surgery, biostatistics, interventional radiology, interventional neuroradiology, and MS clinical neurology. The U.S. National MS Society and the MS Society of Canada worked collaboratively to assemble the reviewers who considered scientific merit, responsiveness to the international Request for Applications, experimental design, likelihood of producing definitive data, and the experience of the applicant teams. The leadership of the US and Canadian MS Societies followed the panel’s recommendations and undertook the funding of these studies.

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Who decided which CCSVI studies to fund?

All research applications underwent a rigorous expedited review process by an international review panel that included experts drawn from all key relevant disciplines including: neuroradiology, neurovascular imaging, MS imaging, vascular surgery, biostatistics, interventional radiology, interventional neuroradiology, and MS clinical neurology. The U.S. National MS Society and the MS Society of Canada worked collaboratively to assemble the reviewers who considered scientific merit, responsiveness to the international Request for Applications, experimental design, likelihood of producing definitive data, and the experience of the applicant teams. The leadership of the US and Canadian MS Societies followed the panel’s recommendations and undertook the funding of these studies.

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Why are these studies necessary, if it’s already been proven that CCSVI is involved in MS?

These studies are necessary because we don’t yet know whether, or if so how, CCSVI contributes to MS disease activity. They will achieve several important goals. First, the studies are carrying out significant steps needed to confirm the phenomenon originally described by Dr. Paolo Zamboni who reported abnormalities in the veins draining the brain and spinal cord in people with MS and resolve the questions raised by him and others as to whether CCSVI is a cause of MS or related to MS in some other manner. Second, these studies will determine how frequently CCSVI occurs in MS, and how often it occurs in people who do not have MS. Third, if blockages are found, the findings will speed the way to determining whether therapeutic trials to correct them will be helpful in improving or altering MS disease process.
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Where are the CCSVI studies taking place?

The principal investigators are located at the following institutions. Some of these investigators also plan to collaborate with investigators at other locations. If any of these study sites announce the need to recruit participants locally, this will be announced on our website.

USA sites, with links to summaries: 

Canada sites, with links to summaries:

 

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What types of specialists comprise each research team?

Like the international advisory panel that reviewed the proposals and recommended the initial grants, the research teams selected bring together a diverse group of specialists in their respective fields to coordinate, execute and evaluate the various elements of each grant. As set forth in the grant details, multi-disciplinary teams include experts in vascular imaging, MRI and ultrasound, neurovascular imagery and neuroradiology, cerebral vascular and interventional imaging. Bringing together experts across these areas will help to facilitate understanding of CCSVI in MS as quickly as possible. The lead investigators cited in the grant summaries were the selection of each submitting institution.
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Will these studies treat CCSVI?

These studies are not designed to treat CCSVI but rather to understand the prevalence and significance of the condition as it relates to MS, and to identify the best imaging technology to evaluate it. These are critical steps toward a better understanding of the relationship between CCSVI and MS disease process.
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Why aren’t these studies focusing on treating CCSVI in MS?

These studies will carry out the important steps necessary to confirm whether CCSVI contributes to MS disease activity and will resolve conflicting data from previous studies. The “blinding” of participants and researchers as well as the use of a comparative control group are essential to ensure that the hopes and expectations of the participants and the researchers do not influence the assessment of the trial outcomes and the interpretation of the results.

These findings will speed the way to determining whether therapeutic trials to correct blockages will be helpful in improving or altering disease process.

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When will we see results from these studies?

The studies are two years in length After the research projects are completed, the studies will be analyzed and submitted for publication in one or more scientific journals. At this point we don’t know when full data and results will be available to the public. In the meantime, several of the investigators have already been sharing their results with other scientists at medical meetings. Results from the seven projects as well as other studies will help guide our planning for future investments in this area of research.

The timing of data analysis, peer review and publication can vary widely and thus it is not possible to predict when results will be available.

As part of our commitment to keeping people with MS and the public informed of progress, researchers will be asked to provide 6-month interim updates to the National MS Society on their grant progress. Read the 18 month progress reports from all seven projects.

The U.S. and Canadian MS Societies are working with the Multiple Sclerosis International Federation and other MS Societies from around the world to ensure coordination of information and to share research data from ongoing work that is underway around the world – further speeding progress.

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What will be the next steps after these studies are completed?

The projects take a comprehensive look at the structure and function of veins draining the brain and spinal cord in people representing a spectrum of MS types, severities and durations, and compare them to the structure and function of veins in people with other diseases and healthy volunteers. The studies incorporate accepted high standards of experimental blinding and controls designed to provide unbiased results. They also use a variety of imaging technologies including the Doppler ultrasound technology originally used by Dr. Zamboni’s team.

Together, these studies aim to further understand the role of CCSVI in MS and identify optimal methods for screening for the condition, which would be necessary to determine the next steps required in advancing this CCSVI lead. Their results will also help guide the development of a therapeutic trials, including the phase I/II clinical trial recently announced by the Canadian Federal Minister of Health to test whether treating vein blockages may be safe and effective in treating people with MS.

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How can I help support CCSVI research?

To support MS research, including CCSVI research, please have individuals email their full name and contact information to giftplanning@nmss.org.
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What else is going on in MS research?

CCSVI grants are only one of many exciting research avenues that address ways to stop MS progression, restore function and end MS forever. Check our Website for information on upcoming live research webcasts and for breaking research news.

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