Would you consider having a lumbar puncture as part of a progressive MS clinical trial?

This is a reposting. 


Some good news; or should I say not bad news. 


We have just received our reviewer's comments back from our grant that was resubmitted to the NMSS. Overall they are positive. The study has now been put forward to the next phase and the NMSS will need to decide if this study is strategically important enough and whether or not they have sufficient funds for the study. I remain hopeful and optimistic. 


As you can see getting funding for investigator-led studies takes time and effort. I would like to thank you for your help in completing the survey below and supporting this study. If you haven't watched the video below I would encourage you to do so; it explains what we are trying to do to help MSers with progressive disease.


Old post:


Some of you have already commented on our new neuroprotective trial design and our proposal to use this design to do a clinical trial in progressive MS.


The design of the trial is controversial as it uses spinal fluid analysis to assess the effectiveness of potential neuroprotective drugs.


A big hurdle to overcome to do this trial is whether or not MS'ers are prepared to have lumbar punctures as part of a clinical trial. To assess this we have prepared a short education video describing the trial design and how we plan to use spinal fluid in the study. We have also tried to address some of the concerns about complications that occur with lumbar punctures so as to make the study more acceptable to MS'ers.


We now need your help; the more people who read this post, watch the video and complete the survey the better. 


If you are willing to help can you please watch the following video before completing the survey below.
It is important that you watch the video before completing the survey; questions in the survey relate to issues presented in the video. MS LP Survey: Click here to take survey or post this link into your browser https://www.surveymonkey.com/s/5JV6723


Thank you.