The Accelerated Cure Project for Multiple Sclerosis

A repository for thousands of vials of frozen blood could one day contribute to a cure for multiple sclerosis.

The University of Colorado Denver medical campus became the ninth site in a national repository project aimed at fighting the neurological disease.

Researchers around the globe can apply to study the blood samples as well as have access to 89-page questionnaires that detail patients' heritage, health history, lifestyle choices and exposure to everything from paint thinners to hair products and ammunition.

The hope is to determine the combination of genetic and environmental factors that puts a person at risk for multiple sclerosis, and perhaps find a way to predict and cure the disease.

MS is a complex genetic disease, brought on by the way genes interact with environmental factors.

Researchers are struggling to understand why it is more prevalent in certain pockets of the world — such as the northern band of the U.S. — and why it is found in its highest concentrations in temperate climates near 40 degrees north latitude and 40 degrees south latitude.

One recent study found that people who had mononucleosis, commonly called mono, as teenagers were at higher risk for developing multiple sclerosis later in life.

"This is not a simple gene-mutation issue," said Dr. Timothy Vollmer, a neuroimmunologist and professor at the UCD School of Medicine in Aurora. "We have a lot to learn yet before we are able to predict it. I'm not sure we ever will."

An estimated 400,000 to 800,000 people in the United States have multiple sclerosis. Colorado's rate is one in 580 residents. That's one of the highest in the nation, according to the National Multiple Sclerosis Society. It is the leading cause of disability in young women and the second-leading cause of disability in young men.

The disease is more prevalent in people of northern European descent — Scots, Swedes, Norwegians — and in women.

Until recently, studies of the disease focused on animals. That's why the blood repository — called the Accelerated Cure Project for Multiple Sclerosis — is key to advancing research, Vollmer said.

The project, based in Massachusetts, has collected blood from more than 1,000 patients. The first person to give blood at the new Colorado collection site — the Rocky Mountain MS Center — was Jimmy Dunlap, a 49-year-old Fort Collins man struck with the disease in 2000.

For Dunlap, a cyclist who raced in the amateur circuit, the first signs of the disease were stinging and numbness in his arm and leg and super fatigue. At first, he blamed it on over-training.

Then one day Dunlap started to slur his words and lost all feeling in his right leg.

Symptoms of the disease would come on strong and then fade, until three years ago when it began to progress more rapidly, Dunlap said. Now he struggles to ride his bike around the park.

"I kind of went to the bottom to figure out you can live or you can die," he said. "Dying wasn't an option."

It was fitting — and planned — that Dunlap was the first to give blood at the Colorado collection site. He is a longtime friend of Tyler Hamilton, a former professional road cyclist who won an Olympic gold medal.

Hamilton, of Boulder, started MS Global — an annual charity race — and helped raise $100,000 to keep the Colorado repository site open for the next two years. He started the Tyler Hamilton Foundation after a family friend with multiple sclerosis asked him to ride in a charity race in Boston.

Four hours of cycling with MS patients and their families changed his take on life, Hamilton said.

"It was kind of a wake-up call for me," he said. "I realized how lucky I am."

The repository project also has collection sites in Maryland, Texas, New York, Georgia, Ohio and Arizona and two in Massachusetts.

The new collection site adds to an ever-expanding body of MS research at the University of Colorado. The Rocky Mountain MS Center at the Anschutz Medical Campus is now involved in 18 clinical trials of MS drugs and for 30 years has collected the brains of deceased multiple sclerosis patients for research.

Source: The Denver Post Copyright 2009 The Denver Post (12/08/09)

Accelerated Cure Project for Multiple Sclerosis, a national nonprofit organization, today announced that they have completed their initial drive to collect one thousand blood and data samples to build the largest openly accessible, multi-disciplinary repository ever assembled for use in Multiple Sclerosis (MS) research.

"This is a major milestone for the Accelerated Cure Project", says Art Mellor, founder of the Accelerated Cure Project. "Limited sample size is one of the most frequently cited reasons for inconclusive results in MS research. Our repository provides researchers with immediate access to a far greater number of samples than most scientists could collect themselves."

In addition, the repository will provide a common population of samples useful for a wide variety of different studies, which will enable results from different research perspectives to be easily combined and correlated. The repository contains various types of samples and data that can support scientists working in many fields - genetics, nutrition, virology, and more. Researchers gaining access to the repository must return their results to the database to be shared with other researchers; this will allow cross-correlation of their results with all other studies performed using the same samples.

Subjects enrolled in the repository will be followed over time to allow new samples to be taken and to record important changes in clinical status. Studying the same sample population over time, and pooling knowledge in a central database, is a major step toward understanding what causes MS, thereby accelerating a cure.

Additionally, samples and data are collected from a number of other similar diseases including Transverse Myelitis, Neuromyelitis Optica, ADEM, and Optic Neuritis to enable studies in these rare neurological disorders and to provide controls for MS studies.

Collection Sites

Contributing to the success of the project is an impressive list of research centers across the country that have joined Accelerated Cure Project as collection sites for the repository. These include Johns Hopkins Medical Center (Baltimore, MD), University of Massachusetts Memorial Medical Center (Worcester, MA), University of Texas Southwestern (Dallas, TX), Multiple Sclerosis Research Center of New York (New York, NY), Barrow Neurological Institute (Phoenix, AZ) and the Shepherd Center (Atlanta, GA).

The Accelerated Cure Project intends to continue collecting samples from as many as 10,000 subjects for its MS Repository.

About Accelerated Cure Project

Accelerated Cure Project for Multiple Sclerosis, www.acceleratedcure.org, is a national nonprofit organization dedicated to curing Multiple Sclerosis (MS) by determining its causes. Accelerated Cure Project believes this effort can be accelerated by organizing the research process and encouraging collaboration between research organizations and clinicians. A "Cure Map" is currently being developed by the Accelerated Cure Project to establish what is known and what is not known about the causes of MS. From the Cure Map, Accelerated Cure Project will facilitate research most likely to reveal the causes of MS in the shortest time through a large-scale, multidisciplinary, MS Repository.

Source: PR Newswire © 1996-2008 PR Newswire Association (24/04/08)

Research takes time when the goal is figuring out the cause — or more likely, causes — of a baffling disease such as multiple sclerosis. But for the people who have the degenerative neurological disease, time is what they don’t have.

MIT engineer and computer networking entrepreneur Art Mellor, diagnosed with MS seven years ago at age 37, saw the need to speed up the pace of research in two ways. He recognised that scientists spread out across the country and the world didn’t have enough information or tissue samples to tell them about how MS and related diseases might unfold. And he saw how isolated these investigators were from one another, reflecting how science is done in academic and industry labs that need to win grants or develop drugs.

The Accelerated Cure Project for Multiple Sclerosis wants to find the causes of MS by creating a repository of detailed information and blood, spinal fluid and other samples from people with the disease and from family members without the disease. Six sites across the country, including UMass Memorial Medical Center in Worcester, are seeking a total of 1,000 volunteers in its first phase to share their histories and lab work that researchers can study. In turn, those researchers must agree to share what they learn. Mr. Mellor and his partners believe this kind of collaboration will yield progress far more quickly than individual efforts under way in many MS centres.

“We can effectively multiply the value of research results through sharing,” he said.

No one knows the cause of MS. There is a strong suggestion from studies that heredity and environment play interwoven roles, but more work needs to be done to tease out those influences. The dearth of large-scale trials was a shock to Mr. Mellor when he and some colleagues set out to create what they call the Cure Map, which is an analysis of all the literature into the causes of MS.

“We thought at first we would locate the holes in the cloth of research and figure out what needed to be patched,” he said. “We determined that the cloth of research was all holes.”

So Mr. Mellor quit his job, started the project and began working with Beth Israel Deaconess Medical Center in Boston and UMass Memorial in Worcester to figure out how to create a network of sites to gather biological specimens and patient histories. It will cost the Accelerated Cure Project $2 million to $2.5 million to complete those 1,000 collections.

Three were added last week when the White family drove up from their home in Blythewood, S.C., to become part of the project.

They had been searching for trials for their 2-year-old son, Will, who was diagnosed with transverse myelitis when he was 5 months old. Transverse myelitis is inflammation of the spinal cord that can occur in MS.

The Whites heard about the Accelerated Cure Project in a TM newsletter. They’d been disappointed that their son was too young to become part of experiments to see what might restore the movement that he has lost from his waist down.

The Accelerated Cure Project isn’t a clinical trial in the sense that therapies are tested. Instead it offers the foundation for questions that may one day lead to answers, Mr. Mellor explained.

The Whites were eager to be involved.

“We were thrilled when we talked with Janice,” Mrs. White said.

Janice Weaver is the UMass Memorial coordinator for the project. She has completed information and samples from 125 people since September. Will was the first child to be included. She explained to Mrs. White that the nine vials of blood taken from each family member — the equivalent of 4 tablespoons — would be frozen and stored for tests that might look at DNA, white blood cell counts or some as yet unknown component of a future researcher.

Will lay across his mother’s lap as Kathleen O’Leary, the head research coordinator, drew his blood. He looked concerned when it was his mother’s turn, but she soothed him as she lifted him up with one arm as her blood was taken from the other.

Their trip is worth the effort, Mr. White said firmly. Three days before their appointment, they had loaded up the family van with Will, his 4-year-old sister, Dorothy Rose, his wheelchair and new dual DVD players to come to Worcester.

Johns Hopkins University is the lead site, but its internal review board had not yet given approval for children to be included in the project. The other sites are the University of Texas Southwestern Medical Center in Dallas, the Multiple Sclerosis Research Center of New York, Barrow Neurological Institute in Phoenix and the Shepherd Center in Atlanta. Beth Israel Deaconess in Boston did not continue after the pilot phase.

Dr. Peter Riskind, director of the MS Center at UMass Memorial, has been involved in the project for about five years. He welcomes the approach, which he thinks can work well in parallel with individual research supported by organisations such as the National MS Society, on whose clinical advisory council he sits.

“We don’t have anything like this” collaboration, he said. “This is a very different approach that we hope will be very helpful in terms of fertilizing ideas. I think it’s wonderful.”

Project founder Mr. Mellor sees himself as part of a movement by patients and family members of patients to move research forward.

“It really takes people who feel the clock ticking,” he said.

Source: Worcester Telegram & Gazette © 2007 Worcester Telegram & Gazette Corp.

The Accelerated Cure Project for MS, a national nonprofit organisation, today announced the formation of their MS Repository, projected to become the largest openly accessible, multi-disciplinary collection of bio-samples ever assembled for use in Multiple Sclerosis (MS) research. The initial phase of the repository development will collect blood samples from 1,000 subjects across the country and make them available to researchers investigating the causes of MS, providing them with immediate access to a far greater number of samples than most scientists could collect themselves. Limited sample size is one of the most frequently cited reasons for inconclusive results in MS research to date. After reaching the 1,000 subject milestone, the Accelerated Cure Project intends to continue enrolling subjects with an eventual goal of recruiting 10,000 participants.

In addition to helping researchers overcome the obstacle of limited sample size, this repository will provide a common population of samples useful in a wide variety of disciplines, which will enable results from different research perspectives to be easily combined and correlated. This will accelerate the identification of meaningful sub-groups within the MS population and will help highlight interactions between factors that can lead to the development of MS, for example, genetic background coupled with a nutritional or infectious trigger. Subjects enrolled in the study will be contacted over time to allow new samples to be taken and to record important changes in clinical status. Studying the same sample population over time, and pooling knowledge in a central database, is seen as a major step toward understanding what causes MS, thereby accelerating a cure for the nearly 2 million people worldwide afflicted with this disease.

Biobanks -- central repositories of biological components such as blood and tissue samples, combined with clinical data about the samples -- are playing an increasingly important role in medical research. This is especially true in research into multifactorial diseases like MS and diabetes, which are believed to be caused by combinations of different factors, and which may even be multiple disorders with different underlying causes but similar outcomes. A common sample population that is large enough to produce statistically significant results and that is accompanied by a database for capturing and combining research results is seen as a highly effective resource for leveraging the knowledge gained by research in multiple disciplines. The Accelerated Cure Project repository is expected to help in identifying possible causes and subtypes of MS, and may also benefit MS research in other ways such as detecting biomarkers that can be used in drug development.

According to Dr. Ben Greenberg, Assistant Professor and Co-Director of the Johns Hopkins Transverse Myelitis Center, "With the advent of the Accelerated Cure Project bio-specimen bank, we will be able to conduct research into multiple potential causes of MS and other demyelinating diseases and be able to cross-correlate results, not only among our own researchers, but with results derived from studies at other research facilities around the country."

The Accelerated Cure Project will act as a central information hub in a growing network of research centers and make all data collected available to all researchers using samples from its repository. Participants in the network currently include Johns Hopkins Medical Center (Baltimore), University of Massachusetts Memorial Medical Center (Worcester), University of Texas Southwestern (Dallas), Multiple Sclerosis Research Center of New York (New York), Barrow Neurological Institute (Phoenix) and Shepherd Center (Atlanta). Because the MS repository is open-access, scientists outside the network who are investigating the causes of MS will also be able to request the use of samples and data.

To facilitate the collection and storage of bio-samples and the capture of sample donor data, the Accelerated Cure Project has engaged the services of organisations with extensive experience in each of these areas. Collection site management is being conducted by Omnicare Clinical Research, a leading contract research organisation operating in 30 countries. Maintenance of the sample repository is being handled by Genomics Collaborative, a commercial repository and genomics lab located in Cambridge, MA. Electronic data collection is being done by the Document Systems Group, a medical informatics company located in Malvern, PA.

Creating and managing the 1,000 sample repository will cost $2.5 million over the next 18 months, with additional funding needed to meet the 10,000 sample goal. Funding for this ambitious project comes primarily from individual donors, with support from corporate contributors such as John Hancock Financial Services, Return Path, and Sun Life Financial, and foundations such as The Montel Williams MS Foundation. To help achieve this financial goal as quickly as possible, the Water Cove Charitable Foundation will match all contributions of $1,000 or more, up to a total of $1 million. Additional matching is available for multi-year gifts.

Art Mellor, founder and president of the Accelerated Cure Project for MS says, "We hope philanthropists will recognise what an exciting opportunity this is. Hundreds of millions of dollars are spent annually on independent research projects, yet with only $2.5 million an entire network of leading researchers can be supported in such a way as to change the face of MS research."

Source: Accelerated Cure Project for Multiple Sclerosis

Press Release

Leading Email Performance Company Partners With National Nonprofit Dedicated To Curing Multiple Sclerosis

The Accelerated Cure Project for Multiple Sclerosis, a national nonprofit dedicated to curing MS by determining its causes, and DSG, Inc., the industry's largest privately- held electronic data capture (EDC) solutions corporation, have partnered to create their MS Data Repository. The expanded system will provide real-time access to researchers worldwide, rapidly increasing the flow of information critical in accelerating the march to a cure.

Multiple Sclerosis, or MS, is a chronic demyelinating disorder of the central nervous system affecting over 400,000 people in the US and over 2 million people worldwide. There are 200 new cases diagnosed each week, yet even today the causes are unknown and there is no cure. To accelerate the process of determining the cause(s) of MS and develop a cure, the Accelerated Cure Project has established an MS Sample and Data repository to facilitate promising areas of research. The repository initially consists of a 1000+ subject longitudinal registry conducted at investigator sites nationwide. With the addition of new collection sites and subjects as participants, the project will expand into a large-scale, multidisciplinary MS Repository. The data and samples will be made available to researchers as an open resource, to promote continued MS research and to determine a cure for this debilitating disease.

DSG's flagship EDC product, eCaseLink(TM) will be used to streamline the clinical trial process and provide real-time access to the clinical trial data for the Cure Map. By establishing a repository of the most current information accessible to researchers around the world, ACP hopes to significantly shorten the quest for this cure. As eCaseLink(TM) has been utilized in numerous central nervous system studies and registries, DSG is best suited to utilize this expertise to provide the most timely, accurate and cleanest data for the study.

"Currently, there is no longitudinal repository of blood, and epidemiological and clinical data from people affected by MS available to researchers looking for the causes," said Art Mellor, President and CEO of Accelerated Cure. "Scientists need access to data on a large scale to make headway into developing a cure. The MS data repository can accomplish this through electronic data capture technology. DSG will help us manage and streamline the data collection now, as well as assist in the expanded collection process as the project grows. eCaseLink(TM) is the best tool to support our efforts to determine the causes of MS."

"The Accelerated Cure Project has done a great thing in spearheading this effort to determine a cure for Multiple Sclerosis," said Tony Varano, President and CEO of DSG, Inc. "With eCaseLink, the MS Data Repository will be available in real-time to researchers around the world. As the repository grows, eCaseLink's scalability will provide the most robust tool for data analysis and information gathering. We are proud to provide both the best tools for reaching this laudable goal and to support this great organization financially in this monumental research program."

About DSG, Inc.

Since 1992, DSG, Inc. has been supporting clinical trial data collection with innovative technology solutions including EDC, ePRO and digital on-demand CRF publishing software to over 300 companies in the life science industry. DSG's products allow friendly, accurate and efficient data capture at any investigator site regardless of the site's technological infrastructure. ECaseLink(TM), DSG's pioneering EDC technology, allows site users immediate server edits, without the traditional need to first save or submit, is fully integrated with eDiaryLink(TM) ePRO, and offers the highest site acceptance, fastest submission speed, and nominal set up time. DSG has successfully supported over 250 clinical trials, at over 14,000 sites, with over 200,000 patients worldwide. For more information, please visit http://www.dsg-us.com.

About the Accelerated Cure Project

The Accelerated Cure Project for Multiple Sclerosis, http://www.acceleratedcure.org, is a national nonprofit organization dedicated to curing Multiple Sclerosis (MS) by determining its causes. Accelerated Cure Project believes organizing the research process and encouraging collaboration between research organizations and clinicians can accelerate this effort. A "Cure Map" is currently being developed by the Accelerated Cure Project to establish what is known and what is not known about the causes of MS. From the Cure Map, Accelerated Cure Project will facilitate research most likely to reveal the causes of MS in the shortest time through a large-scale, multidisciplinary, MS Repository. For more information about the Accelerated Cure Project or to make a corporate or individual donation, call 781/487-0008, visit http://www.acceleratedcure.org, or send an email to info@acceleratedcure.org.

Source: DSG, Inc.