Wednesday, February 24, 2010
PatientsLikeMe: The future of trials?
Gustaf sent me the link to PatientsLikeMe sharing their story and history of their illness. There are even people who stutter sharing information of their condition...
Watch the video at 10:00 when he talks about a different way of doing trials! Not sure about the feasibility, but worth thinking about.
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4 comments:
I think this has the potential to be a great resource. Unfortunately there is not yet a dedicated area for PWS on the Patientslikeme web pages.
I think the link Tom provided is the dedicated area for stutterers. However, stuttering may not be the main problem for people you see listed there. I see a lot of Parkinson patients, for which stuttering is just one of a range of symptoms. That's the beauty of the site in a way - you make all kinds of connections using the same data. If a treatment helps stuttering in Parkinson patients, I sure want to know about it!
I didn't register myself yet, but I consider doing so. If a lot of us do, maybe we can learn something about what works and what doesn't, instead of sitting around waiting for the next research study.
Hi Gustaf
Sorry if I wasn't clear. The link Tom provided is for PWS, but stuttering is not the reason they registered on the site. It would be nice to see stuttering as one of the 'disease communities' as the web site terms them.
Dave
if enough readers suggested it, I think the website would create a section for us!
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