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#1 | ||
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Member
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Todd Sherer's (CEO of The Michael J. Fox Foundation) To-Do list for PD researchers. Included in his list:
"And here’s another idea: Instead of holing up in our laboratories until we have enough vetted and analyzed research to enter the lengthy process of publishing a manuscript, we researchers should set aside our egos and share our data and our tools. Open-access data, nontraditional partnerships and crowdsourcing are some ways we can move the needle forward." http://www.scientificamerican.com/ar...retool_Twitter |
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"Thanks for this!" says: | Bob Dawson (09-26-2013), Bogusia (09-28-2013), Debi Brooks (09-26-2013), indigogo (09-28-2013), lindylanka (09-26-2013), Nan Cyclist (09-29-2013), olsen (09-28-2013), RLSmi (09-28-2013), soccertese (09-26-2013), Stand Tall (09-27-2013) |
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#2 | ||
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Junior Member
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[QUOTE=Tupelo3;1017501]Todd Sherer's (CEO of The Michael J. Fox Foundation) To-Do list for PD researchers. Included in his list:
"And here’s another idea: Instead of holing up in our laboratories until we have enough vetted and analyzed research to enter the lengthy process of publishing a manuscript, we researchers should set aside our egos and share our data and our tools. Open-access data, nontraditional partnerships and crowdsourcing are some ways we can move the needle forward." QUOTE] Couldn't agree more. Share the data; Pieces of the puzzle might then start to come together. |
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#3 | |||
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Senior Member
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Don't usually like to cheerlead, but I will for Todd Sherer and MJFF - they've got our backs - and are really, really smart!
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Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony |
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"Thanks for this!" says: |
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#4 | |||
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Senior Member
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I didn't know you were a researcher. That's wonderful; we've been collaborating for over a year.
Peg |
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#5 | ||
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Senior Member
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Todd's proposals are to be welcomed. They will, in my opinion, increase the efficiency of research, bringing improvments in Parkinson's treatment closer.
Some of the "nontraditional partnerships" that Todd mentions should be between citizen scientists and university scientists and between citizen scientists themselves. For citizen science to thrive we need more than just open data (though we certainly need that too). We need open infrastructure. The biggest thing holding back citizen scientists in the PD-world is, I believe, the fear of running, even small-scale, clinical trials. We would go some way to solving this problem if we had access to "open" ethics committees. PwP, their friends and relatives (PwP++) have a vast amount of experience and skills, much of it research relevant. And, where skills are missing, PD's relatively slow progression, gives people time to educate themselves. If we could organize PwP++, we would get, for free, thousands of extra researchers. John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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