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Thread: SCINetUSA Website

  1. #101
    Hi, Just looking for a bit more clarification on the use of umbilical cord blood cells. Finally became a member of the just a dollar please support squad and received 100 bracelets today with their very informative postcards and also today found out that my sister is pregnant again so this leads to the question:
    Should i consider asking her to store her child's umbilical cord-surely a closer match would have better results or less chance of mutations?. My husband's sister is also pregnant.
    If this is advisable i would need to get the ball rolling now as not sure how the law lies her in the republic of Ireland but there are banks in Northern Ireland.
    Also in relation to the us 102c Phase 2 trial, Noirin is a patient of shriner's, will be 7 in Dec but even if she was 8 when the trials are due to start i feel she would not be eligible as Dr. Betz said that she would be one of the last to avail of the treatment when it happpens. I think it was due to the extent of her injury-complete transection and little cord to be seen C6 to T3.Her functional level is T1 AsiaA.
    If you-jim benn or Dr. Wise can throw any light on this it would be greatly appreciated. thankyou for your continued good work and interest, Sonia.
    Last edited by noirin's mum; 08-23-2010 at 03:23 PM. Reason: name wrong

  2. #102

    Post

    Quote Originally Posted by noirin's mum View Post
    Hi, Just looking for a bit more clarification on the use of umbilical cord blood cells. Finally became a member of the just a dollar please support squad and received 100 bracelets today with their very informative postcards and also today found out that my sister is pregnant again so this leads to the question:
    Should i consider asking her to store her child's umbilical cord-surely a closer match would have better results or less chance of mutations?. My husband's sister is also pregnant.
    If this is advisable i would need to get the ball rolling now as not sure how the law lies her in the republic of Ireland but there are banks in Northern Ireland.
    Also in relation to the us 102c Phase 2 trial, Noirin is a patient of shriner's, will be 7 in Dec but even if she was 8 when the trials are due to start i feel she would not be eligible as Dr. Betz said that she would be one of the last to avail of the treatment when it happpens. I think it was due to the extent of her injury-complete transection and little cord to be seen C6 to T3.Her functional level is T1 AsiaA.
    If you-jim benn or Dr. Wise can throw any light on this it would be greatly appreciated. thankyou for your continued good work and interest, Sonia.
    Sonia,

    Umbilical cord that is collected from a relative may or may not match Noirin. As you may know, cells express human leukocyte antigens (HLA) that tell white blood cells who is native or foreign. In particular 3 HLAs determine whether a transplanted cell or tissue is rejected by the immune system: HLA-A, HLA-B, and HLA-DRB1. A person possess one set for HLA-A, -B, and -DR from the father and one set from the mother for a total of 6 genes that must be matched. A "perfect" match is when somebody has 6:6 match. In many cases, units that are even 4:6 match will be engrafted for bone marrow replacement.

    We don't have enough experience to know how well HLA-matching of umbilical cord blood cells must be to survive long term when they are transplanted into the spinal cord. Some people claim that umbilical cord blood cells do not have to be matched when transplanted into the spinal cord. For example, Beike Biotech uses non-HLA matched cells, infusing them intravenously (into blood) or intrathecally (into the CSF) to treat people with spinal cord injury and other neurological conditions.

    I don't believe that these claims because they present no data of cell survival. Animal studies indicate that neonatal rat blood cells of outbred rats (such as Sprague Dawley or Long-Evans hooded rats) will be rejected within 3-4 weeks when transplanted into the spinal cord. Treatment with immunosuppressants, such as cyclosporin or tacrolimus, prevents the loss of cells. If cells were isogenic (inbred) lines are used, the rejection does not occur (in mice or in the Fischer rat strain).

    The likelihood that Noirin will have a perfect 6:6 HLA match with a relative is highest with a sibling, since a sibling has the genes from the same father and mother. But, even that probability of a perfect match is relatively low. Let us assume that the parents do not share any HLA genes. In such a case, there are four different HLA-A from the mother and father. Likewise, the child receive two of four different HLA-B and HLA-DrB1 genes.

    Father Mother
    A1, A2 / A3, A4
    B1, B2 / B3, B4
    D1, D2 / D3, D4

    A sibling of Noirin from such two parents will have a 1:4 chance of matching Noirin exactly for HLA-A, i.e. A1/A3, A1/A4, A2/A3, A2/A4. If one multiplied each of the three HLA antigens (4 x 4 x 4), one obtains an odds ratio of 1:64, the worst case scenario.

    There are several other considerations:

    • Similarity of HLA antigen between mother and father. If the parents were to share HLA antigens (e.g. A1, A2 / A1, A3), the number of combinations declines to A1/A2, A1/A1, A1/A3. So the odds ratio would decline to 1:48.
    • If Noirin is heterozygous for a given HLA-antigen, she will tolerate more types of antigens from a sibling donor. So, for example, if she is A1/A2, she will tolerate both A1/A1 and A1/A2. Toleration could be considered a match. So, the odd ratio of match is lower.
    • If either parent is homozygous for one of the HLA genes (e.g. A1, A2 / A3, A3), this improves the odds by reducing the number of combinations (e.g. A1/A3 and A2/A3). The chances of a exact match has improve to 1:32. If either parent are homozygous for all three HLA genes, the odds improve to 1:8 for a sibling match.
    • Matching of HLA-DrB1 appears to be more important than -A or -B. Between 80-90% of umbilical cord blood units will engraft even when 1 or 2 HLA-A or -B mismatches are present.
    • Not all cells express HLA-antigens. For example, neurons and oligodendroglial precursor cells do not express HLA as strongly as white blood cells and other differentiatied cells.
    • The immune system in the central nervous system is not as efficient as other tissues. In rats, it often takes 3-4 weeks before the central nervous system detects and rejects allografts from close relatives.


    So, there is no guarantee that cord blood from Noirin's relatives will match her. For example, the highest likelihood of match is with a sibling, who would share the genes from the same mother and father. Depending on the similarity of HLA antigen from the two parents and whether or not they are homozygous, the odds of a 4:6 match may be as low as 50%. More distant relatives of course would be less likely to match.

    In general, we expect that 90% of people in the United States will be able to find a match of 4:6 HLA-match from one of the public cord blood banks. Since a vast majority of cord blood collected in the United States are from caucasians, the likelihood of a match is higher for caucasians, probably on the order of 90%. The likelihood of a match for somebody who is Asian and African may be as low as 50% unless there is a race-specific cord blood bank.

    In ChinaSCiNet, we are using cord blood from Stemcyte. This company has the world's largest collection of Chinese cord blood and we were gratified to find that all the Chinese patients that we screened in the Hong Kong clinical trial matched and 40% actually had perfect 6:6 matches. Stemcyte of course has substantially numbers of caucasian units as well and therefore we think that there almost everybody will be able to find at least a 4:6 HLA-matched unit.

    In summary, you can ask relatives to collect umbilical cord blood of their babies for Noirin but please understand that, while cord blood from a relative is more likely, a 6:6 match cannot be guaranteed. Depending on the similarity of HLA genes carried by the parents, the likelihood of a match can range from 1:4 to 1:64 with a sibling. Note that HLA typing of the baby can be done in utero (from amniocentesis). But, I don't think that there is a need for such an extreme measure. There is a very high likelihood that Noirin will find matched cells from a public bank and there is no need for such extreme measures.

    Regarding Noirin's eligibility for the trial at Shriner's, as you know, we had proposed the age range of 8-17 (because ASIA scores are most reliable between those ages). I hope that we get the Shriner's trial going before that time. By the time Noirin is 8, we may know more about the results of the transplants and I don't think that there should be any problem with her getting this treatment. The reason why we chose umbilical cord blood for the trial is that the cells will be available for people if the trial turns out to be positive.

    Wise.
    Last edited by Wise Young; 08-28-2010 at 02:46 PM.

  3. #103
    Thankyou Dr. Wise for your very detailed response. I just wish that i had listened a little more carefully in biology and physiology! All in all i am still encouraged and scapers bracelets are selling like hotcakes here-its amazing how more approachable people are when it is not embryonic stem cell being discussed.
    I have looked into cord blood banks here and it is a minefield! Only happening in some private hospitals and stored abroad but there is alot of debate going on and i may as well add my voice.
    An old irish saying came into my head and i wish it to you...
    Go N-eir√* an b√≥thar leat- may the road rise up to meet you.
    I hope that all your hard work comes to fruition. Sonia.

  4. #104
    Senior Member cypresss's Avatar
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    I'm a software engineer and I'm open to do some voluntary work for this project. Please PM if you need my time

    good luck and ty for all you did until now!
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  5. #105
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    I've been wondering - are the results from the ChinasciNet positive enough to confidently do similar trials in the USA?

    I guess my nightmare scenario is that the ChinaScINet trials really aren't showing much promise, yet we invest a ton of money to build upon unpromising technology here in the USA.

    I want to say that I'm a supporter of US trials in any case, actually. Just to get stuff going.
    Last edited by ip; 09-25-2010 at 06:43 PM.

  6. #106
    Senior Member lunasicc42's Avatar
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    I am pretty sure that the trials haven't started yet
    "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

  7. #107
    Quote Originally Posted by lunasicc42 View Post
    I am pretty sure that the trials haven't started yet
    Correct. And even if they had, the results are still a year away.

    Quote Originally Posted by Wise Young
    We are assessing the patients at 6 weeks, 6 months, and a year.
    SOURCE

  8. #108
    Quote Originally Posted by ChuckFoss View Post
    Dr. Young, thank you for explaining (once again) the details involved with the SCINetUSA clinical trials. Your patience and drive to help us understand and to get folks involved is extraordinary!
    This detailed explanation would be a great addition to the JustADollarPlease site. I think people are more apt to donate to a cause they can wrap their head around. The history and break-down of the trial phases was very informative. I know you've explained all this before, but having this amount of detail in one place on JustADollarPlease will help convince potentail donors who are on the fence.
    Thanks again.
    I was about to write something like this, but Chuck saved me the trouble. Thanks Chuck! Quite a few of the people who have bought bracelets or demonstrated interest in the trials find the SCINetUSA site a little confusing when I send them the link. Some sort of updated version would be great.

  9. #109
    Quote Originally Posted by Wise Young View Post
    Spidergirl,

    You have highlighted that two major problems that face the spinal cord injury community and the main reasons why we have had no progress in clinical application of promising therapies shown in animal studies to humans.

    The first problem is the ridiculously low investment that our society and government is making towards the cure for spinal cord injury. The amount of funding is not clear but I estimate the amount to be somewhere in the range of $100 million per year. Spinal cord injury costs society about $20 billion per year. If you were British Petroleum and suffering a loss of $20 billion of leaking oil, would you spend just $100 million to solve the problem? Our society can easily afford to spend a billion dollars a year on spinal cord injury research. Much evidence indicates that it costs more than $1 billion to take a treatment from discovery to market. At our current rate of spending of $100 million per year on perhaps 10 different therapies, this means that it will take 100 years for a therapy to reach market. Does it seem too much to ask for government and society to spend $1 billion per year to cure spinal cord injury research. That is less than 5% of costs.

    The second problem is the loss of hope in the spinal cord injury community. In your words, the spinal cord injury community has "lost its way". Christopher Reeve believed in the eventuality of the cure. He also believed in setting goals. Many naysayers attacked his goals. It takes courage to set goals because you don't control everything and you cannot always achieve the goal. He understood that if you don't set goals, you don't achieve them. As you know, I disagree with you regarding biological cures. I believe that treatments that restore function will happen and it is a matter of finding the right combination and approach.

    What can we do about these two problems? The funding is matter of setting priorities. There is no question that our nation has the capability to fund the cure for spinal cord injury research. The federal government spent over a trillion dollar last year just stimulating the economy. The state of California alone is spending over $300 million per year on stem cell research, spending that by the way is showing enormous return for regenerative medicine. So, the reason why the government does not spend the money is not a lack of money but a lack of will.

    The lack of hope is a related and probably underlying reason for the lack of funding. Everybody that I talk to would like to see spinal cord injury cured. However, we are fighting centuries of prejudice, of naysayers, of doctors and scientists who have been trained to say no. This is of course not new. Most people with spinal cord injury don't believe that there will be a cure, at least during their lifetime. Some believe that there will never be a cure. I still remember the care and cure debates in the late 1990's. Many people with spinal cord injury actually opposed funding of research, saying that it is taking money away from cure. We have come a long ways from that time but still have not come far enough.

    The odd thing is that most doctors and scientists now believe that there will be a cure but many people in the spinal cord injury community do not. All the doctors who have joined and want to join the ChinaSCInet and SCINetUSA believe that there will be therapies of spinal cord injury and are very anxious to start testing these therapies in people. To my surprise, in the last few years, some members of the spinal cord injury community not only drew back from the hope but began attacking those who are expressing hope.

    There are many things in our body that we take for granted but are miracles. For example, the fact that you can smoke and your lung keeps repairing itself for years and years is a miracle. This is also true of alcoholics who repeatedly damage their liver, expecting the liver to repair itself over and over again. Although we did not know this until recently, our brains and spinal cords are constantly renewing themselves through stem cells. We take all this for granted except when it does not occur or we have exceeded the limits of the system to repair itself. Then, it becomes a veil of tears.

    We think, for example, that ALS (amyotrophic lateral sclerosis) is a terrible disease that happens to a few of us. Something is killing the motoneurons. I suspect that motoneurons are dying in all of us but, in people with ALS, the motoneurons are dying a little faster and the mechanisms for repairing and replacing them are not sufficient. That is why this is a disease that shows up in people in the late 30's. Lou Gehrig, for example, was one of the best athletes in the world for over 30 years before succumbing to the disease that bears his name.

    A lot of people believe that the spinal cord cannot recover from injury. But, anybody who has been in a rehabilitation center knows that there are many who do recover. I was talking to a very good friend who is mother to a friend with spinal cord injury. She mentioned seeing all these people coming to the hospitals with severe spinal cord injuries and just a patch of sensation and a little movement here and there. Six weeks later, they walk out of the hospital but her son remained. The difference between complete and incomplete spinal cord injury is less than people think. The goal of spinal cord injury treatments is of course to make people more incomplete. I believe that it is possible and the first therapies that will do so will be shown to work within the next few years. Finally, I know that if we don't try, we will never know.

    Finally, let me address the issue of having a videotape of walking animals. As some of you may have realized, I do not believe in showing such videos, even though they may have great public relations and fundraising effect. Why? Because such videos are ultimately misleading and anybody can show such videos. Animals are no different from humans in this regard. If they are incomplete, they will walk. All you have to do to create a walking animal is to hit their spinal cord slightly less hard. So, you have a rat scampering around. Does that mean that you have a cure? I can just as easily show a person with incomplete spinal cord injury walking out of a hospital. Does that mean that we have a cure?

    We need to do good science. Videotapes of walking animals is not always bad science but it can be abused. To prove that treatments are effective, we must do randomized controlled clinical trials with large numbers of patients. This is accepted for all other diseases and conditions. Why is this so hard to get accepted in spinal cord injury. Yes, I understand that seeing is believing, that a single walking animal may raise $25 million. That is probably how some scientists raised their money. I am not willing to do it. It is too easy to fake and is misleading.

    Wise.
    This post that I wrote to Spidergirl nearly a year ago clearly expresses the reasons why I am working so hard to start clinical trials for chronic spinal cord injury around the world. While I was in Norway recently, people asked me why I am setting up clinical trials in Norway? Let me try to answer that question here.

    Norway is one of the wealthiest countries in Europe (judged by the amount of money spent by the government per person). This was because Norway had the wisdom to require that revenues collected from oil in the North Sea be used to benefit the people of Norway. This is as opposed to other countries where much of oil revenues end up in the pockets of relatively few people. They have "cradle-to-grave" health care. While bureaucracy is slow to respond, it has one of the best health care systems in the world.

    Norway has three major spinal cord injury centers to serve perhaps 2500 people with chronic spinal cord injury. They recently built a stem cell center in Oslo that has the capability of preparing cells for transplantation. They of course have surgeons who can transplant the cells and rehabilitation doctors who are very interested in the effects of rehabilitation on recovery of function after regenerative therapies. In addition, they do high-quality science in Norway. Given this situation, Norway is a nearly ideal place to do clinical trials.

    Why not just do it in China? Although ChinaSCINet is leading the way with the trials, if umbilical cord blood mononuclear cells and lithium were to improve function, we still have to face the task of getting the therapy approved around the world outside of China. For that reason, we are trying to initiate simultaneous phase III trials in India, Europe, and the United States. If the treatment is effective, it can be approved and implemented more quickly around the world, so that we don't have people travelling all over the world to get the therapy.

    Finally, we need to do these trials for credibility. A major problem that we have been facing in the field of spinal cord injury is lack of credibility or perhaps lack of people who are willing to believe data that comes from China. Part of this is a "not-invented-here" syndrome where the clinical and scientific leadership of a country simply does not believe that clinical trials carried out elsewhere is as good as their own. Part of it is ignorance because many in Europe and the United States are assuming that the quality of clinical trials and science in China is not as good as their own. Also, nearly every country in the world have their own treatment approval agencies that require local clinical trials. We will be doing phase III clinical trials in the four major populations in the world: China (1.4 billion), India (1.3 billion), Europe (800 million), and United States (300 million).

    Wise.

  10. #110

    Exclusion citeria

    Dear Dr wise

    Can you please tell us if candidates who have a spinal cage inserted into the vertebre, existing pressure sores and acute spinal stenosis are part of the exclusion criteria for the chinasci trials

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