Research Advocate
Dr. Zamboni Speaks at New York University MS Center on CCSVI
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CCSVI has received a lot of attention since Dr. Paolo Zamboni from the University of Ferrara in Italy published preliminary findings in June 2009. CCSVI (Chronic Cerebrospinal Venous Insufficiency) is a reported vascular abnormality where narrowed veins in the neck lead to abnormal blood drainage from the brain. Dr. Zamboni identified this abnormality in several individuals with MS and reported that treating the condition with balloon angioplasty improves MS symptoms.
In February, 2010 Dr.Zamboni was an invited lecturer at New York University’s NMSS-funded MS Center of Excellence. He emphasized the need for more research on the possible connection between CCSVI and MS and suggested that if further evidence supports a link between the two, a new treatment aimed at relieving this venous drainage abnormality may add to the arsenal of therapies available for MS.
Some researchers have said that between 60 and 90 percent of MS patients showed signs of blocked veins, with the higher rates among those with more severe disease. Investigators at a current study at the State University of New York at Buffalo have reported that people with other neurologic disorders as well as some healthy people also exhibit CCSVI. Preliminary results from this study reported at the American Academy of Neurology meeting in April, 2010 were interesting but somewhat mixed. At least 56.1 percent of the MS cohort met the criteria for CCSVI. This was also true for at least 22.7 percent of the healthy controls, and at least 42.5 percent of people with other neurological conditions. Everyone, including Dr. Zamboni, is in agreement that further blinded studies are needed to determine the prevalence of CCSVI in MS and the effectiveness of venous angioplasty as a potential treatment.
Many questions remain about how and when CCSVI might play a role in nervous system damage seen in MS, and at the present time there is insufficient evidence to prove that this phenomenon is the cause of MS. The National MS Society shares the public’s sense of urgency to expeditiously advance the any lead that has the potential of stopping, repairing, or preventing MS. To that end, The US National MS Society and the MS Society of Canada announced funding of 7 projects investigating CCSVI in MS, valued at a total of over $2.4 million. In addition, the U.S. and Canadian MS Societies are in discussion with the Multiple Sclerosis International Federation to establish an international CCSVI Research Coordinating Committee to consider CCSVI research that is underway around the world.
In the mean time, Dr. Zamboni along with neurologists around the world emphasize that people with MS should continue on their prescribed immunomodulatory and symptomatic therapies.
To learn more about CCSVI, visit http://nationalmssociety.org/CCSVI. From this site, you can also view a recording of the Web forum “CCSVI and what it could mean to people living with MS” - held April 14 with Dr. Paolo Zamboni, Dr. Robert Zivadinov, Dr. Andrew Common and Dr. Aaron Miller.
Oral Drugs Make Progress
Oral drugs for MS are getting even closer to the doctor’s office, with one, Ampyra, now available by prescription.
Here’s the scoop:
- The FDA approved Ampyra (dalfampridine, Acorda Therapeutics) in January for its ability to improve walking in people with MS. People with MS and their healthcare providers can call 888-881-1918 for information on Ampyra, including patient assistance programs and insurance coverage. (The drug is costly: wholesale price is estimated to be $1,056 for a 30-day supply.) Watch Dr. Patricia Coyle talk about what Amypra does, how it works and possible side effects at nationalMSsociety.org/ampyra.
- Gilenia (formerly called FTY720 or fingolimod) in an exciting development has been granted a priority review by the FDA. This means it could take as little as six months to determine if this will become the first oral disease-modifying drug for MS. Read the studies thus far at nationalMSsociety.org/gilenia
- With positive results in the latest studies, Cladribine, another oral disease-modifying drug, is in the process of applying for marketing approval. Visit nationalMSsociety.org/news and type “cladribine” in the search field to learn more.
Resources to Find Clinical Trials
ClinicalTrials.gov
CenterWatch
www.centerwatch.com
NARCOMS
www.mscare.org/cmsc/CMSC-NARCOMS-Information
MS-CORE
www.ms-core.org
MS International Federation
www.msif.org/en/research/clinical_trials
TCISCRP
www.ciscrp.org
ResearchMatch.org
www.researchmatch.org
Research Updates
FAST FORWARD, LLC and EMD Serono, Inc. Announce First Results of Their Collaboration to Advance Drug Development in MS -- provide almost $1.5 million for drugs to repair/protect nervous system
EMD Serono, Inc. and Fast Forward, LLC, a not-for-profit organization established by the National MS Society to accelerate the development of research discoveries into new or improved therapies, announced the first four recipients of funding designed to speed research advances in mutually selected high potential areas of MS research.
The awards total nearly $1.5 million. Two are allocated to development programs which are available to for-profit entities and two are allocated to innovation projects, available to university-based investigators and seed-stage for-profit entities. Fast Forward and EMD Serono are currently soliciting proposals for the next round of funding available through this collaboration.
Cutting Edge Genetics Study of MS in Twins Points to New Research Avenues to Understand What Causes the Disease
Researchers report on a new study using novel methods to compare genetic material in three pairs of identical twins, where one twin had multiple sclerosis and the other did not. The team found no evidence of any genetic differences that would explain why only one twin developed MS. The authors point out further experiments that might pinpoint such differences.
MS is thought to occur when individuals who have genes that make them susceptible to the disease encounter some unknown triggering factor. The average person in the United States has about one chance in 750 of developing MS. The identical twin of someone with MS, who shares virtually all the same genes, has a one in four chance of developing the disease, suggesting that some factor(s) other than genetics are involved.
In the Study, the team used next generation sequencing methods (which analyze data at unprecedented speed) to screen the genetic material in three pairs of identical twins, where only one member of each pair had MS. They screened the entire genome (all genetic material) in one pair of twins; studied millions of genetic variations in all of the pairs; and studied the genetic sequences from T cells in all pairs.
This study of identical twins reveals no genetic difference between twins with and without MS. This is a striking finding, given the significant role that genes play in MS, but the study is small and the authors do cite opportunities for further study that might yield better understanding of why individuals with virtually the same genetic blueprints, such as identical twins, are at different risk for developing MS. The authors also present novel methodology for studying the genetics of disease in twins.
For the latest research developments visit nationalMSsociety.org/Research and click on Research News.
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