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Thread: Spinal Cord Injury Network USA (SCINetUSA)

  1. #151
    this might not be the place to put this
    I to think if a short video of what trials is going on and what Dr [ref] researchers know should You Tube and send it to our private e-mail for us to pass on to our contacts and so on with some kind of Pay Pal to donate. I think people will give money if they see things happening if it was only seeing dogs walk.

  2. #152
    Senior Member KIM's Avatar
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    Maybe we have to learn from the Neurogel guys. They have gone way far their objective, 619% over. That adds to 464338.43 €.
    654,366 USD

  3. #153
    Hey Chuck,

    Welcome back!
    Thanks for the suggestions, we need all the input we can get

    We are working on setting up the PayPal option.
    Have a website that is dedicated to SCINetUSA with all the info/details,
    unfortunately, it is not ready (long story).
    It will be linked to http://justadollarplease.org/. Do you think we should still have info pages on JADP?
    I'll mention it to Patricia tomorrow and see what she thinks.

    skeaman,

    We are going to be sending eNewsletters with info about SCINetUSA and links that you can forward to your friends.
    Please give me your info and i will add you to the database.

  4. #154
    Quote Originally Posted by Jim View Post
    Hey Chuck,

    Welcome back!
    Thanks for the suggestions, we need all the input we can get

    We are working on setting up the PayPal option.
    Have a website that is dedicated to SCINetUSA with all the info/details,
    unfortunately, it is not ready (long story).
    It will be linked to http://justadollarplease.org/. Do you think we should still have info pages on JADP?
    I'll mention it to Patricia tomorrow and see what she thinks.

    skeaman,

    We are going to be sending eNewsletters with info about SCINetUSA and links that you can forward to your friends.
    Please give me your info and i will add you to the database.
    Yes, I think it is very important to have an info drop-down to help assure the folks who are "on the fence" about donating to feel convinced that their money is going to a worthwhile cause. I like the fact that the site is simple and it's important to keep it uncluttered, but that one drop-down is an all too important item.

    Thanks for considering my suggestion.

    My email is: chuckfoss@yahoo.com

    Will the donators have the option of receiving the SCINetUSA newsletter when they make a donation?

    Chuck

  5. #155
    Super Moderator Sue Pendleton's Avatar
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    Jim, Let Patricia know I'll be calling too. Have an interview and really need to straighten out one question I have. Thanks.
    Sue

  6. #156
    Quote Originally Posted by Rollin Rick View Post
    Dr. Young,

    You are discussing about a separate trial for C4 and higher in post # 146. Now take someone like myself where I have C4 on the left side, C5 on the right, what type of trial would be considered for people with this type of injury?

    Rick.
    Rollin,

    There are several issues that need to be dealt with in the design a trial for somebody with high quadriplegia. We are proposing the injection of cells into the spinal cord above and below in the injury site. Therefore, in a person with C4, the injection has to be done into C3, where the phrenic nucleus is. This nucleus is responsible for breathing. So, here is my thinking about the situation:
    1. We will need to change the injection protocol. Perhaps instead of injecting above and below the injury site, we can do it into the injury site and below the injury site.
    2. It may be better to see that the treatment works in people with lower spinal cord injury first before attempting it in somebody with a high quad.
    3. A trial that is limited to cervical spinal cord injury will also have different outcome measures, i.e. the arms as well as the legs.

    Wise.

  7. #157
    Quote Originally Posted by Sue Pendleton View Post
    • That is why we are doing a placebo-controlled lithium trial now. If we find significant improvement in people with chronic spinal cord injury after lithium treatment, there is no force in the world strong enough nor any reason to prevent the drug from being used by many patients. But, we should not and must not encourage the use of the drug before the data becomes available. The drug is not innocuous and I have already heard enough stories to make my toes curl in dread. There are a lot of people who have no idea what they are doing and are taking lithium. This includes doctors. It is possible to damage your brain if you take too much lithium for too long. The dose needs to be titrated to achieve specific serum levels. People SHOULD NOT be taking this drug without supervision by an experienced physician.
    I didn't suggest using lithium until the first trials show improvement or lack of. If there is improvement in phase 2s then serum levels should be identified and for various groups: male, female, age, by body weight because even considering differences in sexes, weights and proportion of lean to fat is different in the developed versus third world population. Brain damage? When I first asked my neurologist about it he turned around from his notes and bluntly said "great stuff if you want to destroy your kidneys". I think a protocol for the off label use, IF it improves function/sensation, of lithium should be widely distributed so doctors do know how to use it for SCI as they are currently guesstimating for ALS and how it differs from the dosing used for mental disorders which is what most doctors are familiar with in its use. I merely suggested that why should people who live out of, or in, the reach of the FDA wait decades if, by itself, it actually can improve peoples lives when properly administered.
    I of course know that you are not suggesting that people take lithium. On the other hand, there are spinal-injured people who are already taking lithium. Let me take the opportunity to discuss lithium toxicity:
    Treatment of manic depression. For treatment of manic depression, a serum of level of 0.6-1.0 millimolar (mM) is recommended. We are assuming that the same levels that are beneficial for manic depression would be beneficial for spinal cord injury.
    Toxic levels. Serum levels of 1.6 mM or higher are considered to be toxic. By the way, for older people, toxicity has been reported at 1.0 mM or lower.
    Titration. Because the effective dose range is so close to the toxic does, it is necessary to titrate the dose in each person by testing serum levels of the drug. In our phase 1 clinical trial, people started with 250 mg bid (twice a day or 500 mg per day) and are tested 3 days later for serum levels. If the serum lithium levels are over 0.6 mM and less than 1.0 mM, we keep them on that. If the levels are less that 0.6 mM, we go to 250 mg tid (thrice a day, or 750 mg/day) and test three days later. If the serum levels are 0.6-1.0 mM, we stay at that dose. If it exceeds 1.0 mM, we drop back the dose. If it is less than 0.6 mM, we go to 500 mg bid (i.e. 1000 mg per day)... and so on.
    Toxicity. The main toxicity that we are worried about is brain damage. This usually occurs when lithium levels are greater than 1.6 mM for long periods (i.e. months). Kidney toxicity can occur but we have not seen it so far in people with chronic spinal cord injury that have been treated for 6 weeks. We were also worried about lithium aggravating neuropathic pain but so far we have not seen this either.

    In our experience, the dose of lithium required to achieve and maintain 0.6-1.0 mM levels of serum lithium varies greatly in people with spinal cord injury. Some people reach the target level with only 250 mg tid (i.e. 750 mg/day) and some people require as much as 500 mg tid (i.e. 1500 mg/day). While body weight is a predictor of the final dose that is necessary, it is not a good predictor because the main way that lithium is eliminated is excretion by the kidney. This clearance of lithium also depends on how much fluid a person drinks and their kidney function.

    In the United States, I have heard that manic depression affects about 3% of the population and about half of people who have manic depression take lithium. If true, this suggests that as many 4 million people in the United States are taking lithium. Many people have taken lithium for a lifetime. So, for people who tolerate lithium, it appears to be a safe drug. But, because toxicity levels are close to therapeutic levels, it must be administered by a doctor who is experienced with lithium and can titrate the dose.

    Lithium can cause kidney damage but this is often under special circumstances (Source):
    • Hyponatremia (low serum sodium)
    • Volume depleted (low fluid intake)
    • Low glomerular filtration rate (older people)

    Please note that about 10,000 people per year are admitted to hospital with lithium toxicity because the population of patients who take lithium may not be taking the drug correctly. Of these, about 20% involve moderate to severe toxicity with central nervous system damage and cardiovascular collapse. So, this is not an innocuous drug.

    Drugs that inhibit tubular reabsorption (such as aminophylline and carbonic anhydrase inhibitors) may increase renal secretion of lithium, therefore leading to a higher dose of lithium required to maintain serum levels of 0.6 to 1.0 mM. However, if the patient were to stop these drugs while taking lithium, the levels of serum lithium may rise to toxic levels.

    Then why the change of name from NASCINet to SCINetUSA? Or did I miss a post in this thread or another?
    There were two reasons for the change.
    • We have other countries asking to join the network besides the China and the United States. We decided to go for a name that allowe easier indexing and also naming of trials in different countries, e.g. Italy, Ecuador, Guatemala, Chile, India, Korea, Japan, Lebanon, and others. The use of a country name following SCINet gives us more systematic naming of the network in countries.
    • NASCINet shares the first two characters of NACTN (North American Clinical Trial Network) and the word network. Note, I liked NASCINet because it is close to NASCIS, which refers to the National Acute Spinal Cord Injury Study that assessed methylprednisolone which was carried out from 1979 to 1997.
    Last edited by Wise Young; 06-29-2009 at 04:31 AM.

  8. #158
    Thanks for coming back to me Jim. With all due respect a news letter would be great, but I do think attachment with video footage from where we were to where we are going then the doctors can up date the video of any further progress. If as they say a break through is coming soon I do hope it is not like old sights on the web. I know it is to do with funding.That is why we must take the video footage and send it to people. As I said earlier people that is fit and able will not bother reading the news letter, but a 5 or 10 minute video might do it. P.S it would also give us some hope as well. It is like buying something off the shopping channel. You like to see it working before you buy it, but no guarantee it will work. This way it would be easier to donate.All they would have to do is watch a few minutes of the video and pass it on I think the only people who come on this site are those with S.C.I and looking for a cure. We must appeal to the fit and healthy who might have a conscience . Now if you think this letter is long and winded a 10 minute video would explain more of what is going on. It might be the extra money we need.

  9. #159
    Skeaman- I think your video idea is a good one. People are generally image oriented and I think a video can convey more information than a long post. Of course, there should be links for citations etc.

    Dr. Young,
    Thank you for the explanation and providing details on the lithium investigations. I'm beginning to understand the vast complexity of this matter.
    I think I remember reading a while back that stated that Chinese surgeons are the most experienced at transplanting cells into the spinal cord. I hope this question isn't repetitive, but what type of cells were implanted into the spinal cord? (Is this in association with Dr. Huang?) Did the patients who received the cells experience any nerve restoration? Where are these patients today?

    I guess I'm also confused on why a trial needs to involve many centers in order for it to be properly quantified. I think my confusion is based upon the fact that Geron is conducting such a small pilot study. For some reason my mind thinks that smaller would be faster, but I'm well aware of the fact that I don't have a strong understanding of the clinical trial process. Any thoughts?

  10. #160
    Chuck,

    Donors will automatically be added to the mailing list and therefore will receive the eNewsletter. If they don't want to receive it, they will have that option also.

    skeaman & chaz,

    What specifically did you have in mind for the video?

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