CrowdSpeak: two exploratory ideas for crowdfunding

Two initial ideas for crowdfunding. #CrowdSpeak #MSBlog #MSResearch

“As a follow-up to my two posts this week on crowdfunding I have been thinking about the kind of projects that would fulfill our basic crowdfunding criteria:

  1. Research done using crowd funding must come from the crowd. 
  2. The research can’t be funded by the usual routes of funding. 
  3. Initial projects can’t be massive large scale projects; they should be small milestone driven projects; i.e. enabling projects.

Two topics based on interest from you the reader include the hematopoietic stem cell therapy (HSCT) trial and the Charcot project.


The proposed ZEUS trial below has had a lot of interest from you the readers. To get this project off the ground, and funded, we would need to explore the community’s attitude to the trial and whether it is addressing an unmet need. Exchanges and surveys done via this blog are not necessarily representative of the wider community. We as a group have no expertise in HSCT and we would therefore need to include groups and centres that do have expertise. Paolo Muraro’s group at Imperial College would be a natural fit us. In fact Paolo has expressed an interest in leading this trial.

What we would need to answer are the following list of questions:

  1. Do MSers understand the immediate risks associated with HSCT?
  2. Do MSers understand the undefined risks associated with HSCT?
  3. Would MSers be prepared to be randomised to receive alemtuzumab or HSCT?
  4. Would British Neurologists be prepared to refer patients for a HSCT trial?
  5. Do haematology units in the UK have enough capacity to handle a large national MS-HSCT trial?
  6. What are the economics of HSCT? How do they compare to alemtuzumab treatment?
  7. Would a non-myeloablative or a myeloablative protocol be best?
  8. What is the optimal trial protocol?
  9. Would we only target DMT failures or MSers naive to DMTs?
  10. Would eligible MSers have to have highly active MS or just active MS?
  11. Would the NIHR or MRC be prepared to discuss funding a trial of this nature?
  12. Etc.?

Charcot Project

We as a group would want to focus on targeting both EBV and HERVs (human endogenous retroviruses) with antivirals in MS. Before doing a formal clinical trial we would need to do a small exploratory study using a combination of anti-EBV and anti-retroviral drugs. The primary outcome of the study would be to makes sure our anti-EBV drug is safe in combination with HAART (highly-active anti-retrovirals) and whether the combination were suppressing both EBV and HERV activity within the body. We would propose doing a small open-label study of approximately 20 MSers looking at EBV shedding, and EBV viral loads, and HERV activity in the peripheral blood before and after treatment with the combination of anti-virals. If positive data from this enabling study would be used as part of a grant application to fund a phase 2 trial assessing the efficacy of combination antivirals on MS disease activity. Ideally we would want the phase 2 study to be a parallel design placebo-controlled double-blind study, rather than the cross-over study we have just completed for raltegravir (INSPIRE TRIAL).

In the spirit of crowdsourcing we would appreciate your input on these initial ideas. This is a community project. Thank you.”

CoI: multiple

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.


  • Both proposed trials are very interesting , and yes, I think crow funding is a good way to fund them.
    Just a question : Is HSCT suppressing EBV and HERV activity within the body ?

  • To fund Zeus will require a lot of people to engage…is this not a thing that could actually be funded from other sources if there was a will by the neurologists/haematologists to do this?

  • My only though with Zeus is that it would presumably be in direct competition with MIST in terms of recruiting patients. Not that it's necessarily a bad thing, especially if the entry criteria is broader.

  • I would say for this trial you would have to use the myeblative protocol. For the non-meyo protocols it seems to be an art rather than a science. I believe that about 25% of Dr. Burts patients need a top-off therapy to halt disease if they relapse. I would say for a head to head trial it should be the BEAM protocol applied once vs. Aletumizab tried once.

  • I think that HSCT is quite an active area of research and there seems to be some serious trials already underway in this area. Therefore, I think it would be better to focus the crowd funding on the charcot project as clearly this is an area that is struggling to get support by the more traditional means.

    • 2 down only another 39,998 or is that 399998 to go:-)

      I am sure profG down under is very happy that you will get behind his next venture

    • does prof gold only need 40k for his next study? i'm sure I can get him that. soon it will be called king gold university rather than queen mary after he solves ms

  • Re Zeus – I've heard the John Radcliffe hospital and Bristol BRAMS centre are doing some HSCT research. Could you not link in?

  • As said above. Concentrate on the charcot project as hsct will be a proven therapy within the uk after the mist trial etc are completed.

  • I believe the Charcot project 2 would be the preferred choice as stated before there is a lot of ongoing trials for hsct which maybe could be learned from before you partake in a trial.
    However why are we not hearing more about the initial Charcot project trial? I personally think your on to something with the theory, it just makes sense
    There is a young lad on another forum who had Ms then diagnosed with hiv, once he started treatment for hiv, he found his symptoms subsided

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