All About Multiple Sclerosis

More MS news articles for June 2003

Nonprofit seeks collaboration, and a cure

http://boston.com/dailyglobe2/162/business/Nonprofit_seeks_collaboration_and_a_cure+.shtml

June 11, 2003
By Jeffrey Krasner, Globe Staff
Boston Blobe

To help researchers, the Rocky Mountain Multiple Sclerosis Center started a tissue bank in 1976. The Englewood, Colo., center, one of a handful that have sprouted around the world, has accumulated 275 brain and blood samples from recently deceased MS patients over the past quarter-century. Another 924 MS patients have agreed to donate tissue when they die.

Art Mellor thinks that's small potatoes.

A former high-tech entrepreneur, Mellor, 40, was diagnosed with MS about three years ago. Now he's formed a nonprofit group, the Boston Cure Project for Multiple Sclerosis, in part to collect its own bank of blood, brain, and spinal fluid.

Mellor plans to accumulate more samples than existing repositories, and with a greater depth of information about donors. And to overcome their resistance to collaborate, he'll require researchers using the Boston Cure tissue bank to provide more detailed information about their experiments, thereby increasing the value of the samples. Ultimately, he said, the bank could become an important tool in the Boston Cure's larger goal: discovering the underlying causes of MS.

''Current efforts to find a cure are scattered,'' Mellor said. ''Everybody's making car parts, but nobody has a design for a car. There seems to be a screaming need for access to actual human samples.''

Within weeks, his group will take its first step in establishing the tissue bank, submitting a consent form and plan to the institutional review board at Beth Israel Deaconess Medical Center, the Harvard-affiliated teaching hospital in Boston's Longwood medical district. If the plan is approved, Boston Cure hopes to accumulate samples from 100 patients within six months under a pilot project.

If successful, the project could set a speed record in a field not known for moving quickly. For instance, the Autism Tissue Program, a nonprofit based in Princeton, N.J., has amassed samples from just 54 patients and family members in four years.

Tissue banking isn't the kind of activity that gets many people excited. ''It's expensive, it's administratively difficult and boring, and it's not science,'' Mellor said.

Mellor said that for MS researchers, access to diseased tissue samples has been a problem. Researchers don't want to share their painstakingly assembled sample collections with competing groups, who might then make a discovery and claim credit.

''People tend to use their samples for their own research,'' said Dr. Tim Vartanian, director of multiple sclerosis at Beth Israel Deaconess, and a director and scientific adviser to Mellor's group. ''It's hard to acquire samples. They are, by definition, limited. And researchers hold on to them preciously.''

To build a better tissue bank, Mellor turned to Genomics Collaborative Inc. of Cambridge. For several years, the privately held firm has been building its own repository of diseased blood and tissue samples. GCI's approach is to combine the samples with comprehensive information about the donor and their medical histories. The resulting database enables researchers to sort donors by specific criteria -- age, treatment, exposure to different conditions, genetic mutations, and biological markers such as antibodies. That depth of information makes possible all kinds of computer comparisons before a vial of blood or a sliver of brain is removed from deep-freeze in a vat of liquid nitrogen.

Dr. Michael J. Pellini, chief executive of Genomics Collaborative, said such an approach is crucial in multiple sclerosis research.

Researchers believe MS is an autoimmune disease, in which the body's protective defenses attack the nervous system, destroying myelin, a protective coating that helps nerves work. As the myelin is damaged by scarring, patients suffer a wide variety of symptoms ranging from difficulty walking and swallowing to pain, numbness, seizures, and fatigue. But there's little consensus on what causes the body to attack itself, making MS more like a family of diseases.

Pellini said the complexity of the disease, and the numerous ways in which it operates, make a large tissue bank with all that collateral information a must.

''You need a critical mass because it's a complex disease with many pathways,'' he said. ''To achieve statistical significance in these studies, you need a unique database with the same level of clinical annotation. That level of uniformity does not exist in existing tissue collections.''

Some researchers share Boston Cure's enthusiasm for the new tissue bank.

''In my research group, we have blood samples stored on every patient we've seen in the last 25 years,'' said Dr. Henry McFarland, clinical director of the National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health. ''In the last 15 years, we've added magnetic resonance imaging data. But if someone could do this on a larger scale, it would be an important resource to researchers everywhere. I wouldn't say that MS research is dead in its tracks because of a lack of a repository like this, but for some questions it would be an important tool.''

If approved by the Beth Israel Deaconess review board, Boston Cure would agree to pay doctors a flat fee -- about $200 -- for each sample they collect to reimburse them for the time required to obtain a patient's consent and retrieve the sample. The 100-sample pilot project would establish a template for signing similar agreements with other institutions. Mellor said Boston Cure would seek funding from donors and foundations to support the ongoing collection efforts.

Mellor is confident his approach will get researchers sharing data more readily.

''Researchers appear to be largely unwilling to work with each other,'' he said, ''but they'll work with a neutral third party. We're Switzerland.''

Mellor previously cofounded Gold Wire Technology Inc., a Waltham company that helps companies and government agencies set up and manage computer networks. His MS appeared in 1998, when he suddenly lost sensation on one side of his body. The disease was diagnosed in 2000.

Mellor said he was frustrated by existing MS research, advocacy, and support groups and felt such efforts were scattered. He founded the Boston Cure Project in 2001 and raised $254,000 in donations last year. He expects donations to double this year.

To be sure, the project is a small fry among MS organizations. The National Multiple Sclerosis Society, founded in 1946, has an annual research budget of $30 million and funds about 300 grants each year. The society also helps fund two tissue banks specializing in brain tissue (one is the Rocky Mountain MS center). Mellor said he seeks to avoid duplication and ultimately plans to work with existing brain tissue banks.
 

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