Monday, 16 February 2015

CrowdSpeak: have your say about crowdfunding

Should MS research be designed and funded by the crowd? #CrowdSpeak #MSResearch #MSBlog

"There has been a lot of recent discussion on the blog about crowdfunding research. As a group we have had several internal discussions about using this route as an option for funding research. We think it is an interesting idea, but we feel we need to set some ground rules to initiate a discussion on the topic.

The following are some initial points for discussion:

  1. We feel that any research that is done using crowd funding must fund ideas that comes from the crowd. In other words you need to have a major input into the generating the hypotheses and design of the project. Do you have any ideas?
  2. The type of research crowd funding must be research is that can’t be funded by the usual routes of funding, for example the MRC, the NIHR, the Wellcome Trust, or the MS Society. This would limit the type of research to high-risk proof of concept studies; the type of projects that get rejected by the usual peer review process. In other words crowd funding should help get innovative projects off the ground. 
  3. The projects can’t be massive large scale projects. We think they should be small milestone driven projects with each stage to the project requiring new rounds of funding. This would allow the researchers to bring back results to the community and you can then decide if the project is worth taking forward or not. It will also keep you informed about the research process and how it develops. I have found the disconnection between researchers and some of the community about the actual research process, surprising; for example about the time and costs involved in developing drugs for MS and the level of proof required to say an intervention is successful or not.  
  4. We can’t raise money via the blog. The aim of the blog is to communicate research and clinical information about MS. As soon as we start raising money to fund research for ourselves the blog will lose credibility.  Therefore any funding raising that we will benefit from needs to be done via another route.

We are aware that there are cultural differences in relation to crowdfunding."




CoI: multiple

5 comments:

  1. It looks like neuroprotective therapies and remyelination therapies are only being tested in those with active disease ie rrms. Any novel research should focus on regrowing nerves and axons to replace those which have been lost.

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  2. Crowd sourcing can be a great source of funding. Also, input from the crowd can point to needs the experts overlooked. But no... don't have the crowd design the trials. Use the data and the funds to design better trials, but use your expertise to do the actual design.

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  3. Study I’d like to see… Antiviral effects of artesunate on JCV in Tysabri patients.

    Dose: Oral, 50mg, twice per day for 5 days successively. Double doses on the first day. Maintenance dose of 100mg per week. This is the regimen for the treatment and prevention of Malaria recommended by the Chinese handbook of Clinical Drugs.

    Suggesting potential: http://www.ncbi.nlm.nih.gov/pubmed/25155602

    It would be interesting to see the effect of artesunate on JCV titers over a period of time. Whether those on artesunate would have JCV titers at lower risk of PML.

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  4. Artesunate should be very effective against EBV as well:

    http://www.ncbi.nlm.nih.gov/pubmed/21396962

    ReplyDelete
  5. Plenty of evidence artesunate is effective against HHV6, also.

    http://www.naturheilpraxis-hollmann.de/HHV-6_Artesunate.pdf

    ReplyDelete

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