Announcement

Collapse
No announcement yet.

Spinal Cord Injury Network USA (SCINetUSA)

Collapse
This is a sticky topic.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Trial selection

    If I'm selected to participate in the trials. Will I be allowed to view the video before undergoing surgery?

    Comment


      Originally posted by spayne View Post
      If I'm selected to participate in the trials. Will I be allowed to view the video before undergoing surgery?
      I don't see why not.

      Summer Open House Report- http://www.icontact-archive.com/arch...cd3f59ef7b74ad

      Comment


        Is there any chance that C4's won't get operated on or should I not worry?
        "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

        Comment


          C4's will not be in this trial.

          Comment


            Originally posted by Jim View Post
            C4's will not be in this trial.
            naw, I know that. I mean in an upcoming trial is there any possibility that C4's will not be able to be operated on due to the phrenic nucleus? ... And approx how long do you think it will take until the separate trial for high quads can commence? I mean will I be waiting the full duration of this initial trial of patients up to C5 to complete or might the trial for upper injuries be able to Initiate within that time
            "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

            Comment


              Why just the WISCI to measure walking????

              Originally posted by Jim View Post
              I don't see why not.

              Summer Open House Report- http://www.icontact-archive.com/arch...cd3f59ef7b74ad
              I read the NOTES from the open house.

              Proposed Phase II clinical trial
              ● Randomized controlled three arm study of UCBC transplant into injured spinal cord with
              lithium carbonate or placebo, followed by locomotor training in treatment of chronic
              complete SCI.
              ● Outcome measures:
              Primary outcome measures include Walking index of SCI score (WISCI)
              Secondary outcome measures include SCIM scores.

              Why just the WISCI to measure walking????

              https://scireproject.com/outcome-mea...-2c29ca8d-88af

              ""Clinical Considerations
              There is minimal additional burden for clinicians to administer the WISCI as the test falls into typical clinical practice parameters.
              A score is possible even if the individual cannot walk 10 m. However, because the furthest walk distance is 10m, it may not be suitable for individuals with minor impairments.

              It would be a useful to incorporate the WISCI II into clinical practice and to evaluate new SCI therapies. Additional tests may be necessary to assess endurance (e.g. 6MWT) and/or walking speed (eg.10MWT), especially for individuals with greater walking capacity. ""

              WHY NOT THE SPEED AND EFFORT??????

              What is the C in e=mc2?

              In one of Albert Einstein?s revolutionary scientific papers published in 1905, E=mc2 was introduced; where E is energy, m is mass, and c is the speed of light in a vacuum.

              Comment


                Hello Jim, I see Kessler is picked for an interviewing site, Will they post how we can sign up? Thank you

                Comment


                  Originally posted by JoeMonte View Post
                  Hello Jim, I see Kessler is picked for an interviewing site, Will they post how we can sign up? Thank you
                  Jim said that when recruitment begins it will be posted here for sure
                  But you probably want to hear that from him, lol thats the way I am regarding trial info
                  "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

                  Comment


                    Page 9 Open house notes

                    Originally posted by lunasicc42 View Post
                    naw, I know that. I mean in an upcoming trial is there any possibility that C4's will not be able to be operated on due to the phrenic nucleus? ... And approx how long do you think it will take until the separate trial for high quads can commence? I mean will I be waiting the full duration of this initial trial of patients up to C5 to complete or might the trial for upper injuries be able to Initiate within that time
                    Lunascic42 ?. this might answer your question ? but it takes so long my guess 2022

                    What is the timeframe from one wave to the next? To the next trial?

                    Dr. Young: Anticipating the patients will be done two weeks apart in each center.

                    We haven?t planned all the next trials yet. There?s a phase 3 that will probably occur at the end of
                    2020. US, Europe, China, and India.

                    Before or during this time, want to do three Phase 2 studies to expand the indications: 8-17 children,
                    65-80 older adults, incompletes, and maybe 4th one: cervical spinal cord injuries, injecting lower
                    and into the lesion.)

                    Comment


                      Originally posted by spayne View Post
                      Lunascic42 ?. this might answer your question ? but it takes so long my guess 2022

                      What is the timeframe from one wave to the next? To the next trial?

                      Dr. Young: Anticipating the patients will be done two weeks apart in each center.

                      We haven?t planned all the next trials yet. There?s a phase 3 that will probably occur at the end of
                      2020. US, Europe, China, and India.

                      Before or during this time, want to do three Phase 2 studies to expand the indications: 8-17 children,
                      65-80 older adults, incompletes, and maybe 4th one: cervical spinal cord injuries, injecting lower
                      and into the lesion.)
                      If that turns out to be the reality, that is actually a Bummer
                      Ideally I am hoping that the procedure can get fasttracked to C4's quicker, even if it's under compassionate use which I think one might have to pay for... I dunno, I am just trying to go through all these possible situations in my head and figure a way in which I can finnagle myself into the operating room, I have been getting increasingly frequent and bad Uti's and one went septic so I need this to stop and now time is really of the essence, my health was actually pretty stable despite sci but now it seems like I am getting more fragile and need a treatment to circumvent that
                      "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

                      Comment


                        I mean, a C3 accidentally got through in the China trial, so I would like more information Specifically on the recovery of that specific patient... Info info info
                        "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

                        Comment


                          Originally posted by lunasicc42 View Post
                          naw, I know that. I mean in an upcoming trial is there any possibility that C4's will not be able to be operated on due to the phrenic nucleus? ... And approx how long do you think it will take until the separate trial for high quads can commence? I mean will I be waiting the full duration of this initial trial of patients up to C5 to complete or might the trial for upper injuries be able to Initiate within that time
                          It depends on when we begin this trial. When it's completed, then we can start the trial for high quads. And, money has to be raised.

                          Originally posted by JoeMonte View Post
                          Hello Jim, I see Kessler is picked for an interviewing site, Will they post how we can sign up? Thank you
                          When recruitment begins, it will be posted here, and an eBulletin will be emailed. If you received the eBulletin i sent out yesterday, you are on the list. If not, PM me your email.

                          Originally posted by lunasicc42 View Post
                          I mean, a C3 accidentally got through in the China trial, so I would like more information specifically on the recovery of that specific patient... Info info info
                          The paper shows exactly what each person in the trial recovered.

                          The guy with C3 was 24 yrs old, 7 years post-injury. Started as an ASIA C, finished as ASIA C. Made it to KLS level IV, WISCI went from 0 - 6, Motor score went from 18-20. Touch & Pin Prick, 60-63, SCIM Score (Spinal Cord Independence Measure) remained at 40.

                          Comment


                            Originally posted by Jim View Post
                            It depends on when we begin this trial. When it's completed, then we can start the trial for high quads. And, money has to be raised.



                            When recruitment begins, it will be posted here, and an eBulletin will be emailed. If you received the eBulletin i sent out yesterday, you are on the list. If not, PM me your email.



                            The paper shows exactly what each person in the trial recovered.

                            The guy with C3 was 24 yrs old, 7 years post-injury. Started as an ASIA C, finished as ASIA C. Made it to KLS level IV, WISCI went from 0 - 6, Motor score went from 18-20. Touch & Pin Prick, 60-63, SCIM Score (Spinal Cord Independence Measure) remained at 40.
                            I mean this in a purely inquisitive way and I was never good at understanding the asia and wisci things but do those small changes in the Numbers essentially mean very little recovery? or is that good?
                            "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

                            Comment


                              Originally posted by lunasicc42 View Post
                              I mean this in a purely inquisitive way and I was never good at understanding the asia and wisci things but do those small changes in the Numbers essentially mean very little recovery? or is that good?
                              This was barely any recovery. Two measurements that really show recovery is a change in ASIA (A to B or C) or a big change in the SCIM score.

                              Comment


                                The only thing that I'm curious about is the Neurological Level which has to be at C5. I know this is done by performing an ASIA exam on the subject by having the subject tell the difference between Pin Prick and Light Touch sensation. What would happen if the subject meets all the criteria that are listed except when it comes to the Neurological Level the subject is determined to be C4? I'm guessing the subject would be disqualified for the trail correct? I'm asking this because some people (doctors/researches) can perform the ASIA exam very differently as one doctor might classify the subject with a C5 Neurological Level while another doctor might classify the subject with a C4 Neurological Level all depending on what spot they use to perform the exam.

                                Comment

                                Working...
                                X