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Thread: Spinal Cord Injury Network USA (SCINetUSA)

  1. #181
    I think this should work-

  2. #182
    Jim, if NASCINet has been renamed to SCINetUSA, shouldn't the NASCINet.org website be renamed to SCINetUSA.org? Or would that cause too many broken links (Page Not Found)? If so, a duplicate site named SCINetUSA.org should be created mirroring NASCINet.org, or at least make mention of the name change on the NASCINet.org website.
    Are you still looking at adding a link to JustADollarPlease.org to direct people to the website (either SCINetUSA.org or NASCINet.org)?

    Chuck

  3. #183
    Senior Member Leo's Avatar
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    Thanks Chuck, Harriet and Jim,

    ordered them a couple days ago and hope to have photos posted in a few days.

    rock on
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  4. #184
    Hi all,
    Great work setting up the networks & fundraising.
    Does anybody know of a similar network being setup in Australia?
    thanks in advance
    martin

  5. #185
    Great suggestions Chuck, we are setting that all up now. I've been in Fla for a week.

  6. #186

    SCINetUSA September Update

    We are currently creating the SCINetUSA website and are going live ASAP. Once the website is live I well be sending out an eNewsletter that will direct people to the JustADollarPlease.org website where they can donate.

    Please send me your emails so you can pass the newsletter on to your friends/family. jimbenn@rci.rutgers.edu

    Read this post by Dr Young that outlines our fundraising goals-

    Quote Originally Posted by Wise Young View Post
    I think that people are angered and frustrated. They are reading about our government throwing trillions of dollars at Wall Street and defunct banks. They have endured through 8 years of our government spending over a billion dollars a day on Iraq and Afghanistan. They are seeing the Bill & Melinda Gates Foundation spending billions on AIDS in Africa.

    Why is spinal cord injury stuck in the mud? Why can't we get things going? Are we just unlucky? While we have had our share of unluck, so have everybody else. Is it because we are not getting our message through? I don't think so. Because of Christopher Reeve, people know what spinal cord injury is and want to cure it.

    Many people here who know me here have probably seen a shift in my posts. For years now, I have preached a message of hope and the need to lobby the government, companies, and others to support spinal cord injury research. This of course needs to continue but recently I have been saying that the spinal cord injury community must help itself.

    The spinal cord injury community can do it without having to wait for anybody else to do it for us. A recent study sponsored by the Christopher Reeve Foundation suggests that more than a million families live with spinal cord injury in the United States (Source). If every one of these families were to give a dollar a day, it would add up to $365 million.

    Thus, it is not a matter of affordability. Every family with spinal cord injury can afford to give a dollar a day. The problem is that not everybody with spinal cord injury believe that a cure is possible. Of those who do believe in cure, many don't think that clinical trials are the way and they would rather go and spend large sums on unproven therapies at overseas clinics.

    So, we come back full circle to the question of who pays for clinical trials. For many years, clinical trials were funded by company, government, or foundations. Patients are not supposed to pay for the trials. Doctors are not supposed to charge patients for clinical trials. Since companies have the most money, they are the most common sponsors.

    In certain fields, the government does pay for clinical trials. For example, in the cancer field, the National Cancer Institute has long funded Centers of Excellence to do clinical trials. Since the 1970's, a majority of cancer patients have been randomized between the best standard and the most promising investigational therapies.

    Less than 1% of patients with spinal cord injury are being randomized to investigational therapies in the United States. I would, however, venture a guess that almost every patient has tried something experimental, whether it is herbal medicine, acupuncture, hyperbaric oxygen, repetitive exercise, functional electrical stimulation, and even prayers.

    After years of trying to raise money for clinical trials, I have come to the conclusion that the only solution is to develop clinical trial networks that would be paid for by the people. Such networks should be efficient and prepared to do trials on the best available therapies. We should have multiple networks and may the best, the most efficient, and most productive network win.

    We have come up with the idea of asking people to pay a dollar a day for the clinical trials. This approach has several advantages. First, we are not waiting for some sugar daddy, politician, or company to fund the trials. By the way, they all have some conflict of interest. Second, it is affordable. Every family with spinal cord injury can afford to pay a dollar a day. Third, it gives people a voice and a choice in clinical trials. It empowers people.

    Wise.

  7. #187

    Update of the SCINetUSA Status

    The investigators of SCINetUSA have met three times to discuss clinical trials of Umbilical Cord Blood Mononuclear Cells (UCBMC) and Lithium on
    • March 12-14, 2009 at Brackenridge Hospital in Austin Texas.
    • April 23-29, 2009 in Beijing and Kunming, China.
    • July 23-24, 2009 at the Keck Center at Rutgers University, Piscataway

    US103 Phase III Trial to assess UCBMC transplants and lithium.

    At these meetings, we have reached a consensus on the treatment approach, the randomization, the inclusion/exclusion criteria, and outcomes for the Phase III trial to assess the safety and efficacy of treating people with chronic spinal cord injury with UCBMC \and lithium. The investigators agreed that the trial should have:
    four treatments groups: placebo, lithium, UCBMC, and UCBMC+lithium.
    The outcome measures will be American Spinal Injury Association neurological scores for motor and sensory function, the Walking Index of Spinal Cord Injury (WISCI), the Spinal Cord Independence Measure (SCIM), the Visual Analog Scale (VAS) for pain, and the Modified Ashworth Scale (MAS) for spasticity.
    The inclusion criteria will be 18-64 years, C5 through T10, able to stand in a standing frame for at least one hour per day, and informed consent.
    The exclusion criteria will be lack of MR or CT images showing the lesion edges, significant pre-existing medical conditions that may interfere with surgery or outcome, including pregnancy, anti-coagulation, and any reason that the investigators may have to believe that the person may not complete the trial.
    An 6-month observation period will be included in the trial, where subjects will be observed over a 3 month period and examined 3 times to ensure that the neurological findings are stable. During this period, the subjects will encouraged to increase their standing time to one hour/day.
    One-year followup. Subjects will be observed for one year, with followup at 6 weeks, 6 months, and 1 year after treatment.

    What we have not yet reached a consensus on is the rehabilitation approach. Some investigators believe that the same protocol should be applied to all subjects. There has been much debate over the intensity of the rehabilitation, e.g. 6 hours a day 6 days a week, 3 hours a day 5 days a week, and 3 hours a day 3 days a week. Likewise, the type of rehabilitation has also not yet been decided, i.e. whether we will use treadmill stepping training, overground walking, or other approaches.

    As soon as the protocol is agreed upon, we will apply to the respective institutional review boards (IRB's) of the participating centers and the Food and Drug Administration (FDA) for permission to carry out the trial. Each of the centers will be trained and tested for their ability to carry out the trial. Research agreements must be signed between the participating institutions and SCINetUSA. Funds are being raised for the trial. We are hoping to initiate this trial in 2010.

    US102B Phase II Escalating Dose Trial of UCBMC and lithium

    In China, we had been planning a Phase II trial to assess increasing volumes of UCBMC cell suspensions from 4 to 8 and 16-µliter injections. These will be injected four times into spinal cord, into the dorsal root entry zones above and below the injury site. The goal of the trial is to show that these injections are safe and do not cause any neurological deficits. So, the trial will be comparing five treatment groups.
    • Four 4-µliter injections.
    • Four 8-µliter injections.
    • Four 16-µliter injections.
    • The highest "safe" volume plus methylprednisolone.
    • The highest "safe" volume plus methylprednisolone and lithium.

    In China, most cell transplanters are injecting 35-50 µliters into the injury site. In a clinical trial in the United States (the Proneuron trial), they injected 10 µliters into the spinal cord above and below the injury site. While these studies have not reported any complications from the cell transplants, we want to make sure that we are not causing further damage to the spinal cord with the injections. Since we are making injections above the injury site, where there is still some function, we can assess the sensory and motor function of the segment above the injury site.

    So, the trial will start with a relatively small volume of 4 µliters. Each group will have four subjects. If none of the subjects develop a significant neurological deficit from the injection, we will go ahead to the 8 µliter group and likewise to the 16 µliter injections. Significant neurological deficit will be defined as loss of 3 motor points or 3 sensory points (added pin and touch) that lasts for at least a week. If two subjects in a group develop significant neurological deficits, we will fall back to the previous volume and all the rest of the subjects in the study will receive the dose.

    We were planning to start this trial in July 2009 Kunming. The trial was approved by the IRB of the hospital and also by the Western IRB (a commerial IRB). However, on May 1, 2009 China issued new regulations that will stop all cell transplant procedures on November 1 unless the hospital doing the procedure and the procedure are approved and certified. While these regulations were not meant to restrict clinical trials, we were not allowed to proceed with the trial and we are still seeking permission to do so.

    Given this delay, we decided to go ahead to do the Phase II trial in Hong Kong and the United States instead of China. In July, we approached our investigators at Hong Kong University and the Chinese University of Hong Kong. They agreed to do it and their IRB have approved the trial. In August, we approached our investigators at the Brackenridge Hospital in Austin and they agree to do it. We are in the process of preparing the protocol for the IRB in Brackenridge and applying to the FDA for the IND to initiate the trial in the United States.

    The schedule for the trial depends on our completing the trial protocols and getting IRB and FDA approval of the trials. Our goal is to start both the Hong Kong and the Brackenridge trials in January 2010. Much work needs to be done to prepare the cells and test shipments of the cells to the hospitals, to train everybody at the institutions, and to get all the regulatory approval.

    Wise.
    Last edited by Jim; 09-13-2009 at 01:45 PM. Reason: Changed date to 2010

  8. #188
    Senior Member lunasicc42's Avatar
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    this sounds spectacular!!!
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

  9. #189
    Thanks for the update, it looks things are going forward and the cure is getting closer

  10. #190
    Senior Member SymKat's Avatar
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    Quote Originally Posted by Jim View Post
    I just donated and added this to my facebook page.

    Everyone should add this to their facebook, myspace and Blogs!

    http://justadollarplease.org/

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