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    Results of HSCT trials ?

    I have been trying to track the HSCT clinical trials for a long time. I'm talking for several years.
    I have seen that Dr. Burt at Northwestern has completed several of these trials with, I imagine, about a thousand participants. But I can't find any published results ! And then there is the stem cell trial that was conducted by Dr. Sadiq at NYU, last year. What has become of the results of this trial ?
    I don't understand why this information is so difficult to find ! Any ideas?

    #2
    Tisch Center

    Hello Jerry. There are a couple of articles on the Tisch.org website this month. I haven't read them - mind doesn't work that well anymore.

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      #3
      OOps Tisch

      The website is tischms.org

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        #4
        Originally posted by JerryD View Post
        I have been trying to track the HSCT clinical trials for a long time. I'm talking for several years.
        I have seen that Dr. Burt at Northwestern has completed several of these trials with, I imagine, about a thousand participants. But I can't find any published results ! And then there is the stem cell trial that was conducted by Dr. Sadiq at NYU, last year. What has become of the results of this trial ?
        I don't understand why this information is so difficult to find ! Any ideas?
        Hi Jerry

        There is a new article (January 13, 2016) from the TISCH NY website (that its2much has suggested).

        It looks like really good, positive news - reversal of disability and repair in Secondary Progressive and Primary Progressive MS (hey, that's us).

        Once TISCH gets the funding, they will recruit patients for this Summer (2016) in New York.

        They use the patients own bone marrow stem cells.

        The nice thing about this, is that it's right here in the USA.

        http://tischms.org/news/fda-advises-...-cell-trial-ms
        PPMS for 26 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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          #5
          Originally posted by KoKo View Post
          It looks like really good, positive news - reversal of disability and repair in Secondary Progressive and Primary Progressive MS (hey, that's us).

          Once TISCH gets the funding, they will recruit patients for this Summer (2016) in New York.
          Hi Koko I hope beyond hope they get the funding they need!! Fingers crossed!
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator

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            #6
            Originally posted by Seasha View Post
            Hi Koko I hope beyond hope they get the funding they need!! Fingers crossed!
            Hi Seasha

            Me too - wouldn't that be great if they do get the funding? (If only I had won that darn Powerball Lottery.)

            Also, I like the fact that in Phase I there were no adverse effects. Fingers crossed that it continues as well.
            PPMS for 26 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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              #7
              Koko,
              Thanks for the info ! The nice thing is the MS clinic is about an hour from my home. I've been on that block in NYC, many times. I could ride the train into NYC and I have many times. I hope this works out. The good thing is it is in the U.S.!
              The bad thing is that the NMSS 'declined' to fund the pilot trial with 20 patients, including Richard Cohen. Makes you wonder, huh ?

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                #8
                Originally posted by JerryD View Post
                The nice thing is the MS clinic is about an hour from my home. I've been on that block in NYC, many times. I could ride the train into NYC and I have many times.
                Hi Jerry Wow, the clinic is very close to where you are!

                Originally posted by JerryD View Post
                I hope this works out. The good thing is it is in the U.S.!
                Yes, many people have travelled far and wide, overseas, to receive stem cell treatment. This one will have FDA oversight.

                Originally posted by JerryD View Post
                The bad thing is that the NMSS 'declined' to fund the pilot trial with 20 patients, including Richard Cohen. Makes you wonder, huh ?
                Oh yeah - I will be very disappointed if the NMSS doesn't help to fund these trials. My contributions for MS research have gone exclusively to the NMSS via the MS Walks (when I could still walk more than a few yards) and personal contributions.
                PPMS for 26 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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                  #9
                  Koko,
                  My email to NMSS president, Cyndi Z., has received no response. I figure that the Tisch MS center picks their trial participants from the IMSMP which is the 'in house' MS pool. I am just guessing because I am not getting any straight answers from the principal parties involved. This is frustrating and it really sucks.

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                    #10
                    Hi Jerry

                    Originally posted by JerryD View Post
                    My email to NMSS president, Cyndi Z., has received no response.
                    Maybe she's trying to get some answers too? It would be nice though, if she would at least let you know something.


                    Originally posted by JerryD View Post
                    I figure that the Tisch MS center picks their trial participants from the IMSMP which is the 'in house' MS pool. I am just guessing because I am not getting any straight answers from the principal parties involved. This is frustrating and it really sucks.
                    Even so, the article states "the main obstacle in initiating the study is the need for critical funding."

                    The main issue right now is $$$$.
                    PPMS for 26 years (dx 1998)
                    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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                      #11
                      Are you sayin that the trial participants

                      may be paying for the trial treatment themselves?

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                        #12
                        Originally posted by its2much View Post
                        may be paying for the trial treatment themselves?
                        Hello its2much

                        No, I wouldn't think that clinical trial participants have to pay anything.

                        The TISCH Medical Research Center itself needs the funding to proceed with Phase II of the trials.
                        PPMS for 26 years (dx 1998)
                        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                        Comment


                          #13
                          Originally posted by its2much View Post
                          may be paying for the trial treatment themselves?
                          Hi its2much

                          My comment in a previous post that "if only I had won that darn Powerball Lottery" was meant to say that I would have donated a nice large sum of money to help fund the TISCH clinical trials.
                          PPMS for 26 years (dx 1998)
                          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                          Comment


                            #14
                            The issue is that witholding any information about funding and trial participant pool or any other info feels like a hostage/ransom situation. I don't like it and I don't appreciate it as my heath continues to decline. What is the reason that the HSCT results are NOT easily accessible ?

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                              #15
                              A article in the Economist today about work Dr. Burt is doing. We talked about this recently, Jerry. (It also brings up the rising costs of MS drugs. Interesting how everyone attacked that horrible guy who raised the price of that cancer/AIDS drug 500% overnight but big pharma gets a pass).

                              http://www.economist.com/news/scienc...pe/ed/curingMS
                              "It matters not how strait the gate,
                              How charged with punishments the scroll,
                              I am the master of my fate,
                              I am the captain of my soul." ˜William Ernest Henley

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