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    ChinaSCINet and NASCINet meetings in China

    I have been having only intermittent internet contact over the past five days due to multiple meetings in China.

    On the 24th of April, ChinaSCINet held a clinical outcome measures workshop in Beijing for the investigators of its 25 centers. During this meeting, we had Mary Schmitt from Thomas Jefferson teach us about the WISCI (Walking Index of Spinal Cord Injury) and Malka Itskovich from Tel Aviv University teach us about the SCIM (Spinal Cord Independence Measure). The network is adopting both of these outcome measures and this is the second workshop that we are devoting to teaching investigators how to apply these measure. During the workshop, I presented a detailed summary and update of the progress in the clinical trials and rationale for the proposed clinical trial on umbilical cord bloo mononuclear cells and lithium treatment of spinal cord injury.

    On the 25th and 26th of April, the IANR (International Association of Neurorestoratology) held its second annual meeting. Many investigators from all over the world and of course China met to present their work on various therapies of human brain and spinal cord injury. It is truly amazing how many places are now transplanting stem cells and other cells to treat spinal cord injury. Also, there are many animal studies being presented. For example, I attended a meeting called "Youth Forum", consisting of 13 presentations by young investigators and 9 of the 13 presentations were reporting positive results of olfactory ensheathing glial cell transplants in animals and humans.

    We then went to Kunming for a consensus conference on optimal rehabilitation for in the clinical trial for North American Spinal Cord Injury Network (NASCINet) centers and with the following people:
    • Kessler/UMDNJ (New Jersey). Steven Kirschblum.
    • Mt. Sinai (New York). Jean Zenca, Nurit Weiss, Tom Bryce.
    • Brackenridge Hospital (Texas). Craig Kemper, Charlotte Smith
    • Shepard (Georgia). Keith Tansey
    • Thomas Jefferson/Magee Rehabilition (Philadelphia, PA). Mary Schmitt and colleague.
    • University of Colorado in Denver. Kevin Lillihai.
    • Tzuchi Buddhist Hospital (Taiwan). Tzuyung Chen 陳子勇 and colleagues.
    • Chinese University of Hong Kong. Dr. Wai San Poon.
    •* Rutgers. Jim Bennet, Pui Tom, Patricia Morton

    The neurosurgeons in our group spent most of yesterday in the operating room observing surgery and cell transplants to the spinal cord. The rehabilitation doctors spent much of the morning observing the intensive walking program that they have in Kunming. We have been engaged in intense discussions about what the best rehabilitation procedure that is affordable and feasible in the United States for restoring function in clinical trials of potential regenerative therapies of spinal cord injury. We are continuing the discussions today. Last night, after a really long hard day of discussion, everybody was treated to dinner and a show about minority groups in Yunnan province. Today, by the end of this morning, we will have a consensus on the rehabilitation program we will adopt in nascinet. We will then give people an afternoon to visit the stone forest [source]http://www.travelchinaguide.com/attraction/yunnan/kunming/stone_forest.htm[/source].

    By the way, it was really interesting seeing Jim Bennett try out the walking program in Kunming.

    Wise.

    #2
    Thanks for the up date Prof. Young, it looks things are going forward as they should.

    Paolo
    In God we trust; all others bring data. - Edwards Deming

    Comment


      #3
      thanks
      "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

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        #4
        Dr. Young,

        I met with Kevin Lillihai in Denver a few years ago. He's a very enthusiastic and passionate doctor. He was ready to go to trials 2 years ago and has clinical trials experience.

        Comment


          #5
          Originally posted by Schmeky View Post
          Dr. Young,

          I met with Kevin Lillihai in Denver a few years ago. He's a very enthusiastic and passionate doctor. He was ready to go to trials 2 years ago and has clinical trials experience.
          Schmeky,

          We have become good friends and he has made the time to come to China twice with us now. He is in Kunming with me right now.

          Wise.

          Comment


            #6
            Originally posted by paolocipolla View Post
            Thanks for the up date Prof. Young, it looks things are going forward as they should.

            Paolo
            Paolo, I forgot my little dongle that I use to transfer pictures from my camera to the computer or else I would be posting them. It has been an exhilarating meeting but incredibly hectic. I feel like a bit of flotsam being blown by a hurricane.

            Wise.

            Comment


              #7
              How will you be going about training therapists at the 8 centers? Have they been told about the upcoming trials? Through what agency? The therapists at mount sinai are outstanding but it would be interesting to hear how they will prepare for the rehab end of these trials.

              Comment


                #8
                Originally posted by ricanstruction View Post
                How will you be going about training therapists at the 8 centers? Have they been told about the upcoming trials? Through what agency? The therapists at mount sinai are outstanding but it would be interesting to hear how they will prepare for the rehab end of these trials.

                We had a consensus conference concerning what is possible and feasible in rehabilitation centers in the U.S. and what is desirable for our trial. We will not be breaking new grounds in rehabilitation. We will be testing a cell transplant therapy and lithium. Our goal is to have an aggressive and credible rehabiltation program to maximize recovery from the treatment. We sought to standardize it. There is still a lot of work to do before we have the protocol.

                Wise.

                Comment


                  #9
                  Dr. Young,
                  Thank you for all you do. What a wonderful read this morning to see so many dedicated researchers and therapists from the US attending. Are you hopeful and encouraged by what you hear and see others doing or are you thinking they are jumping the gun with the transplanting of stem cells?

                  Comment


                    #10
                    If he is still there, please tell Keith Tansey, hi from Harley Jerry. He was my Doc for years at UTSW before he went to Shepard.

                    Sounds like a very good gathering.
                    "a T10, who'd Rather be ridin'; than rollin'"

                    Comment


                      #11
                      Originally posted by McDuff View Post
                      If he is still there, please tell Keith Tansey, hi from Harley Jerry. He was my Doc for years at UTSW before he went to Shepard.

                      Sounds like a very good gathering.
                      Keith was here and had a great time (he told me). I am hoping that he brings the word back to Shepard and they decide to join NASCINET. The group had a really productive discussion concerning what kind of rehabilitation program is feasible and optimal for the U.S.

                      Wise.

                      Comment


                        #12
                        Originally posted by jmh View Post
                        Dr. Young,
                        Thank you for all you do. What a wonderful read this morning to see so many dedicated researchers and therapists from the US attending. Are you hopeful and encouraged by what you hear and see others doing or are you thinking they are jumping the gun with the transplanting of stem cells?
                        Well, at some point, we need to stop dipping our toes into the water and start swimming. We had five neurosurgeons who observed three cases. In one, they transplanted some cells. About 8 rehabilitation doctors observed the walking programs, interviewed patients, and then sat down to discuss what kind of program can be done in the U.S.

                        Most of the rehabilitation doctors from the U.S. believe that we cannot do 6 hours a day and 6 days a week program like they are doing in Kunming. The Kunming Army General Hospital is a very special place and I don't know of any other place in the world that is able to motivate patients to walk as much as this and for many months. At the present, we don't know whether such intensity and duration of walking training is necessary. But, we want to do the most that we can, using the limited resources that we have in our participating centers to give our treatment the best chance of improving locomotor function.

                        Wise.

                        Comment


                          #13
                          Originally posted by Wise Young View Post
                          Well, at some point, we need to stop dipping our toes into the water and start swimming. We had five neurosurgeons who observed three cases. In one, they transplanted some cells. About 8 rehabilitation doctors observed the walking programs, interviewed patients, and then sat down to discuss what kind of program can be done in the U.S.

                          Most of the rehabilitation doctors from the U.S. believe that we cannot do 6 hours a day and 6 days a week program like they are doing in Kunming. The Kunming Army General Hospital is a very special place and I don't know of any other place in the world that is able to motivate patients to walk as much as this and for many months. At the present, we don't know whether such intensity and duration of walking training is necessary. But, we want to do the most that we can, using the limited resources that we have in our participating centers to give our treatment the best chance of improving locomotor function.

                          Wise.
                          Why do you thing Kunming is able to have such an intensive program and not the US? Is it cultural? Economical? Do they simply have more people trained in the sciences and physical therapy? A combination of the above? I agree that doing these trials with the existing SCI model system is a great start but I also think it's a clear indication that this country needs to quit being so weak sauce in it's research endeavors. Not to sound harsh, I understand that efficacy and safety w/trials are important, but it seems that, at least in China, they have their act together in terms of rehabilitative medicine.

                          Comment


                            #14
                            Originally posted by Wise Young View Post
                            Well, at some point, we need to stop dipping our toes into the water and start swimming. We had five neurosurgeons who observed three cases. In one, they transplanted some cells. About 8 rehabilitation doctors observed the walking programs, interviewed patients, and then sat down to discuss what kind of program can be done in the U.S.

                            Most of the rehabilitation doctors from the U.S. believe that we cannot do 6 hours a day and 6 days a week program like they are doing in Kunming. The Kunming Army General Hospital is a very special place and I don't know of any other place in the world that is able to motivate patients to walk as much as this and for many months. At the present, we don't know whether such intensity and duration of walking training is necessary. But, we want to do the most that we can, using the limited resources that we have in our participating centers to give our treatment the best chance of improving locomotor function.

                            Wise.
                            Dr. Wise,

                            It's great what the clinic in Kunming is doing to motivate people to walk 6 hours a day, but in my opinion people should find the motivation in them self if they really want something bad enough.
                            As you probably remember even before I met you in Houston (when Hwang Woo-Suk was there as well,) I have made it a daily routine to stand up and walk in the Glider between 6-8 hours every day.
                            What's the motivation? Motivation is me (myself) and that I want this badly, so don't need anyone to motivate me.

                            Luigi.
                            every time you fall,
                            stand up tall....
                            come back for more

                            Comment


                              #15
                              Originally posted by ricanstruction View Post
                              Why do you thing Kunming is able to have such an intensive program and not the US? Is it cultural? Economical? Do they simply have more people trained in the sciences and physical therapy? A combination of the above? I agree that doing these trials with the existing SCI model system is a great start but I also think it's a clear indication that this country needs to quit being so weak sauce in it's research endeavors. Not to sound harsh, I understand that efficacy and safety w/trials are important, but it seems that, at least in China, they have their act together in terms of rehabilitative medicine.
                              The Chengdu People Liberation Army General Hospital in Kunming is a very special place. The spinal cord injury center there is led by a small team of neurosurgeons who operate on some 700 acute spinal cord injury cases a year, of which about 400 are ASIA A. They also have an unspecified number of chronic cases. They have over 100 beds that are devoted to spinal cord injury alone. So, it is a sight to see every morning when over 100 patients start their walking exercises. The nurses there are wonderful. I have now been visiting the place several times a year since 2004 and I recognize patients, some of whom come back to retrain.

                              One of the reasons why they are so highly motivated to recover and walk is because there is very little support and care of people with chronic spinal cord injury in China. Although it is not quite as bad as it is in India (where doctors tell patients that if they don't walk, they die), Chinese who go home without walking are at a significant risk of dying if they develop decubiti, thrombophlebitis, and other complications of spinal cord injury. China is not particularly accessible to people in wheelchairs and there are relatively few jobs available for people who are disabled.

                              I estimate that there are probably over 800,000 people with spinal cord injury in China today. This number is increasing at the rate of 80,000 per year. China probably has over a third of the world's population of spinal-injured. Recovering function is a very high priority for this population. If the patients are fortunate enough to be taken care of by this particular group of doctors and nurses, they work very hard. Also, there is a strong work ethic in China. If there is one thing that Chinese do well, it is to work hard.

                              We should not necessarily assume that the hard work alone will restore function. We also do not know how much work is optimal. It is possible that 6 hours a day is too much for some people. I know that if I walk 6 hours a day, I would be totally exhausted. What are the optimal intensity (hours per day and days per week), duration (months), and type (treadmill, overground, weight supported, non-weight-supported) of locomotor training? This is a question that we should answer in clinical trial and probably only China has the numbers of patients and the locomotor training programs to be able to answer. The answer is very likely to differ depending on severity of injury.

                              Wise.

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