CCSVI, which stands for Chronic Cerebrospinal Venous Insufficiency, is an abnormality in blood drainage from the brain and spinal cord that is being investigated as a contributing factor in nervous system damage in multiple sclerosis. Dr. Paolo Zamboni from the University of Ferrara in Italy published initial findings in June 2009 from a study of approximately 65 patients. There have been additional studies published since then, some of which show results that conflict with the original findings.
CCSVI is an endovascular surgical procedure, which involves inserting a tiny balloon or stent into blocked veins in order to improve the flow of blood out of the brain and spinal cord. Based on the results of preliminary research published in respected peer journals, Dr. Zamboni, as well as experts in the MS field, recommended larger scale studies to determine if CCSVI has a higher prevalence in people with MS than the general population. If this is so, we also need to know how that compares with the prevalence of CSSVI in other neurologic disorders. Once the prevalence of CCSVI in MS is determined, there needs to be rigorous scientific studies to determine the impact of CCSVI on MS, and if this treatment is efficacious and safe.
Dr. Zamboni suggests that if further evidence supports the link between MS and CCSVI, that its treatment may ultimately add to the arsenal of therapies available for MS. He has emphasized the need for more research on his hypothesis, and noted that people with MS should remain on their immunomodulatory therapies as has his wife after her endovascular surgical procedure.
The National MS Society responded rapidly to the questions raised by the CCSVI theory and in July of 2010, seven CCSVI research projects received $2.4 million from the Society and the MS Society of Canada. After the first year, these studies have progressing in a positive direction and are on target to report results at their projected completion date in 2012.
The new studies will carry out significant steps needed to confirm the phenomenon originally described by Dr. Paolo Zamboni 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. These studies will also resolve conflicting data from previous research, such as how frequently CCSVI occurs in MS, and how often it occurs in people who do not have MS. 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.
Already more than 486 people have undergone scanning with various imaging technologies, including the Doppler ultrasound technology originally used by Dr. Zamboni and his collaborators, as well as magnetic resonance studies of the veins (MR venography), catheter venography, MRI scans of the brain, and clinical measures.
Adding clarity to the relationship between CCSVI and MS is essential in assisting people with MS secure any treatment they may consider. Medical institutions and health care providers require research data confirming the validity, necessity and safety of any procedure they provide, and in their view that data is not yet available as it relates to the relationship between CCSVI and MS.
For more info, visit www.nationalMSsociety.org and click on “The latest on CCSVI.”
- MS International Federation
OUR VISION: A world free of multiple sclerosis
OUR RESEARCH FUNDRAISING GOAL: We will raise $250 million for MS research by the end of 2015
OUR RESEARCH GOAL: We are a driving force of MS research and treatment to:
- STOP: We must stop all disease activity and prevent further progression for people already living with MS
- RESTORE: We must restore all function that has already been lost to nervous system damage from MS
- END: We must work to completely eradicate MS and prevent it from ever occurring in the future
HOW WE WILL ACHIEVE OUR GOAL:
- Pursuing all promising avenues
- Expanding the quantity and quality of MS research worldwide
- Connecting people, resources and ideas
- Speeding development of new treatments
- Proven track record of results with significant impact on people’s lives
NOW and No Opportunity Wasted utilized with permission from NOW, Inc., and in partnership with Phil Keoghan, tireless advocate and Champion for MS Research.
In the largest MS genetics study ever undertaken, a global collaboration of scientists has identified 29 new genetic variants associated with MS, and confirmed 23 others previously associated with the disease, verifying a major role for the immune system in the development of MS. The study involved nearly 10,000 people with MS and more than 17,000 controls without MS, and was funded by the Wellcome Trust, the National Institutes of Health, the National MS Society and many other organizations. Some 250 investigators of the International MS Genetics Consortium and the Wellcome Trust Case Control Consortium 2 participated in the study. The results are now to be confirmed and expanded in an independent, second large-scale set of cases with a research grant from the National MS Society.
Most of the genes implicated in the study were related to immune function, and more than one-third have previously been confirmed to be associated with autoimmune diseases. In a second study published in PLoS Genetics (2011;7), collaborators show that diseases believed to be autoimmune share many similar genetic variants. To date, the results of genetics studies in MS do not significantly improve the ability to provide genetic counseling to individuals. However the findings promise to better define the biological pathways leading to MS and enhance our ability to design better treatments for early MS.
Biogen Idec and Abbott Pharmaceuticals announced in a press release that DAC HYP – a liquid formulation of the monoclonal antibody daclizumab delivered via monthly injection under the skin – reduced the average annual relapse rate significantly in a study of 600 people with relapsing-remitting MS over a one-year trial. Full data from the “SELECT Study” are to be presented at an upcoming medical meeting.
Daclizumab is a laboratory-created monoclonal antibody that blocks the activity of interleukin-2 receptor-alpha, a key immune activator in MS.
The core purpose of the Consortium of MS Centers (CMSC) is to maximize the ability of MS healthcare professionals to impact care of people who are affected by MS, thus improving their quality of life. The CMSC recently held its 25th annual meeting in Montreal, featuring more than 200 reports on research to improve care and quality of life of people with MS. Following is a small sample of these reports:
Exercise boosts cognitive function: Cognitive changes are common in people with MS -- as many as half of people with MS will develop problems with cognition. More physical activity was associated with faster information processing speeds, independent of a person’s disability status. In a similar effort, the National MS Society is currently funding a trial comparing the ability of aerobic exercise versus a stretching program to improve cognitive performance.
Fatigue: MS predictor? Fatigue is one of the most common symptoms of MS, and may be the most prominent symptom in a person who otherwise has minimal activity limitations. Joseph Berger, MD, and colleagues (University of Kentucky, Lexington) looked at the frequency with which fatigue “heralds” the onset of MS. Among 5305 people with MS, 29% reported fatigue in the three years before MS diagnosis. In 30% of these patients, fatigue was the only symptom preceding MS diagnosis. Fatigue preceded MS diagnosis by an average of 501 days. The authors advise that, in people experiencing unexplained fatigue, a detailed neurologic history and exam should be conducted to rule out MS.
Wii™ for improving balance: Balance can be difficult to maintain for people with MS. 18 people with MS were studied using Nintendo Wii Fit Plus three times per week for six weeks. Functional balance improved, and measures of fatigue and other symptoms remained stable, indicating no adverse effects. The National MS Society is currently funding a 12-week trial to determine whether Wii is an effective balance rehabilitation tool for people with MS.
Resveratrol: Negative preclinical results: Previous research has suggested that resveratrol, a component of red wine, enhances the activity of a molecule (SIRT1) that might help to preserve nerve fibers, and it has been shown in several studies to decrease the severity of the MS-like disease EAE in mice. Fumitaka Soto, PhD (Louisiana State University, Shreveport) and colleagues reported that resveratrol actually worsened EAE in mice, causing severe damage. Further research will be needed to sort out this question.
Evaluating relationship education: “Relationship Matters: A Program for Couples Living with MS” was developed by the National MS Society to help couples affected by MS to strengthen their partnerships and minimize the impact of MS on their lives. Couples receive eight hours of programming via “teleclasses” or in-person workshops. Kimberly Koch, MPA (National MS Society) and colleagues looked at a sample of more than 1,000 participants, and found significant increases in relationship satisfaction, along with clinically significant improvement in mental health.
Risk tolerance for MS therapies: Recently, several more effective, but more risky, therapies have become available to treat MS, and more are under development. Society grantee Robert Fox, MD (Cleveland Clinic Foundation) and colleagues administered a web-based questionnaire on risk tolerance to more than 10,000 people enrolled in the North American Research Committee on MS (NARCOMS) registry. A total of 5,446 people completed the questionnaire, and the results showed that three factors were associated with increased tolerance for risky therapies: increased disability, male gender, and not currently being on an MS treatment. These results can help to guide discussions between clinicians and people with MS.
Psychosocial factors related to smoking: Research suggests that smoking may increase the risk of developing MS and may speed disease progression. Joseph Ostroff and colleagues (State University of New York, Buffalo) examined factors that distinguished smokers from nonsmokers in a sample of 1300 people with MS whose information was recorded in the New York State MS Consortium registry. Smokers were significantly more likely to be single or divorced, and to experience higher levels of pain, fatigue, tension, and loneliness.
Air travel accessibility: The challenges of travelling with a disability were discussed in focus groups and in visits to the local airport by a team including the St. Louis VA MS Center and Spinal Cord Injury Service, the Gateway Chapter of the National MS Society, Paralyzed Veterans of America, the St. Louis Americans with Disabilities Act (ADA) coordinator, and local airport, airline, and Travel Security Administration staff. Targets for accessibility improvement were identified, including the need to train airport staff regarding wheelchair mechanics and batteries; the need to provide opportunities for travelers with disabilities to do “dry runs” to increase familiarity; and the need to improve signage to indicate accessible routes to baggage claim.
Educating physical therapy students about MS: Angela Rosenberg, PT, DrPH (University of North Carolina, Chapel Hill) and colleagues, including Kaye Gooch of the Society’s Eastern North Carolina Chapter, presented a program developed by the university and chapter to educate physical therapists in the management of the neurologic and psychosocial needs of people with MS. Evaluations of the program indicate increases in MS-specific knowledge, and the team hopes this two-year program will serve as a model for other universities.