Possibility for an extension for the cure forum?

[Jeanie De Marco]

Hi,
I was wondering, with all the posts we have on the various cure therapies that are being researched etc. there is loads of info out there, and sometimes it can be hard to track it and to see the newest updates. I was wondering if there would be a way to either create a new branch of the cure forum, or a few sticky threads or something for research. This way it can be easily updated. In other words some sort of factual database with all the information. This way we can click on a stem cell company or a researcher, and find wht the latest news is. Any ideas???

Cheers
JM

[Faye]

Hi JM,

I can't speak for CC, but I'm trying to compile such a resource here:
http://www.cureparalysisnow.org/forum/

Just research, treatments and some advocacy.

Thanks,
Faye

[Wise Young]

Hi,
I was wondering, with all the posts we have on the various cure therapies that are being researched etc. there is loads of info out there, and sometimes it can be hard to track it and to see the newest updates. I was wondering if there would be a way to either create a new branch of the cure forum, or a few sticky threads or something for research. This way it can be easily updated. In other words some sort of factual database with all the information. This way we can click on a stem cell company or a researcher, and find wht the latest news is. Any ideas???

Cheers
JM

JM, the job that you are referring to is much more difficult and complex than you think. Over 1000 papers are published every year on spinal cord injury, both in animals as well as in humans. Many of the treatments that people are referring to have no published data, often for many years. Somebody has to review both the quality of the data and how reliable the data is. In cases where published data is limited and most of the data comes from testimonials, the evaluation of the data for listing is very difficult. I know that I have tried many times to do this without success. I have even hired professional writers to go through the thousands of responses that people have written on this site to specific questions about therapies. Every month, I give a lecture that tries to summarize the latest information on the therapies that are still active. This alone takes many hours to prepare and over an hour to deliver. So, the database approach is not easy. Almost every therapy that has been reported to be beneficial (or rumored to be bneeficial) is discussed on this site. Let us continue discussing this and see how it can be done.

Wise.

[Jeanie De Marco]

Hi Dr. Young.

Many thanks for your reply. I am fully aware of how difficult this would be, if not near impossible. That is why i was thinking of narrowing it down to actually only those therapies, proven or not, that are actually conducting surgeries, or clinical trials on humans? This should narrow it down quite a bit. I understand what you say and its totally true. Alot of the therapies today are not proven, which is a big problem and leaves people to hurry over and get surgery...

[Wise Young]

Hi Dr. Young.

Many thanks for your reply. I am fully aware of how difficult this would be, if not near impossible. That is why i was thinking of narrowing it down to actually only those therapies, proven or not, that are actually conducting surgeries, or clinical trials on humans? This should narrow it down quite a bit. I understand what you say and its totally true. Alot of the therapies today are not proven, which is a big problem and leaves people to hurry over and get surgery...

Jeanie, I do do something like this in a powerpoint file that I present on the first Friday of every month at Rutgers. I have been posting the powerpoint file (or at least a pdf form of the file to save space and also allow people who don't have powerpoint to see it) at http://carecure.org/index.php?page=articles. In the past 6 months, I have been so busy, I have not been updating those articles as often as I use to. I will try to do so. Basically, the powerpoint file gives the latest advances in the treatment of spinal cord injury, as I see it.

I have been thinking for some time that perhaps I should start something on Wikipedia which has the facilities for adding and editing information and then continually updating it. This way, it can give a much wider base of viewers and I can put the links to this forum for discussion of the treatments. This will require that I find a couple of weeks block of time to do this. It would be like writing a book.

Wise.

[Jeanie De Marco]

Thank you very much Dr Young. I did not know about the existance of this file... I have browsed Wikipedia numerous times and it is a great site.

Thanks for all that you do!
Regards
JM

[drnader]

I have been thinking for some time that perhaps I should start something on Wikipedia which has the facilities for adding and editing information and then continually updating it. This way, it can give a much wider base of viewers and I can put the links to this forum for discussion of the treatments. This will require that I find a couple of weeks block of time to do this. It would be like writing a book.

Wise.

So, do it! concisely plz! with only you to edit!

[roshni]

Dr. Young,

This is a brilliant idea. I hope you have the resources (especially time) to go through with it.