Being very interested in the latest advances in PD research, I have been trying to stay updated and searching the web for the latest buzz. However, I've realised there is simply too much out there for one person to keep track of. For that reason I want to find more people who would be interested in pooling resources and maybe together we can cover more interesting areas.
I am not sure of the best way of doing this so please feel free to comment or suggest some other way, but my first idea was to use Twitter. I don't know how many here are familiar with using Twitter, but it can be used in a lot of ways, one being "bookmarking" interesting information.
Parkinson's Movement can also be followed on Twitter (@PDMovement) and I suggest that if you find an interesting link, article or something else on PD that you want to share, you Tweet it and include @PDMovement in the tweet. That way, we administrators will get the information.
Any views/opinions?
Written by
SaraRiggare
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I agree with you we need some way of getting the research data co ordinated so that their is not duplication of research .I have a twitter account and wonder if I am getting maximum use out of it, I doubt it; should we have a link to a guide on how to use twitter to get the most out of it ?
Thank you move4parkinsons, very good suggestion! I would be happy to give a few tips on how to get the most out of twitter, maybe in an online conference with audio and screen sharing facilities. Would more people be interested?
I'd be very happy to add a journal club page to the dopadoc site, then we could do it in 3 simple steps...1. Everyone email me article suggestions at dopadoc at gmail dot com and then I will post suggested articles 2. everyone look at posted articles and rather than vote we have a rotating system where each (week?) one of us picks and briefly summarizes the article which will appear on the page. 3. Then we simply create a google or yahoo free chat room and meet there if in real time OR use this forum in "extended time"...for the record the leader each week writes a list of 10 brief points about 'x', the topic, which I can post as a lead article crediting the group members involved.
Very interesting suggestion! Dopadoc.com is a fantastic resource where you do an amazing job and I really like your idea of gathering articles somewhere.
As you are well aware, Dopadoc, I started a sort of mindmap in an online resouce called Pearltrees, and I would be very happy for more people to join: pearltrees.com/t/parkinson-...
My idea is to use the pearltree to gather information together that we can use for further discussions.
I agree that it would be a good idea to have a chat room, online conferencing room or similar, I know of a service I have used before, I will look into it again. And maybe then we could set a time for discussing the design of the journal club?
BTW I really think of dopadoc as a "community" rather than "my site" and thus invite any of you to join and become a principal in the site...for instance Sara with your statistical background if you became the "in-house" statistician/research critic I'd give you full access as an administrator.
There are possibly several technical solutions to implement a seamless flow of information between the different interested parties. With possibly a mix of Twitter, hastags, feeds, curation,..
I'd like to start with the needs I'd see for my own situation:
- I more or less get my hand on any new study thanks to Google Search, Twitter, newsletters,...but I get many times the same link or just a copy of the original press release. I'd like to easily know if link is just a duplicate, or if it is an analysis of the original release
- I'd like to put every new breakthrough in context; Is it just a republish of a result already presented 3 months ago? Is it an additonal result on the same study? Is it the result of a new Phase for a compound?
- I'd like to relate the different breakthoughs and clinical results in broader categories (L-Dopa enhancers, DBS, Gene Therapy, Cell Therapy,..)
This may seem like a lot of work, but this is probably what most of us do anyway. Very incompletely for myself, but I feel that everyone of us could contribute with our own research if, we agree on some categorization, and agree on a simple tool to push the information to the common pot (I'm very found of the Twitter hashtags, if I may now talk about my preferred technical solution)
I'm interested in helping out. I like dopadocs idea of being able to summarize the articles and share our take on it. This could eventually help us to push the patient-driven research agenda along by letting researchers know what the PD community is interested in, what we don't see much value in, and making suggestions on where we feel PD research should be heading. I've said that they can't find a cure without us as part of the total research process (volunteering for trials and helping develop trials).
I agree with all and especially think Israel's message is so true. They don't have to look very far for answers, we patients hold clues and answers, yet no one seems interested in asking. Instead we end with a money driven scattershot approach that replicates; essentially going nowhere. They are running in place. They answer to no one. Not much seems to make it to way of clinic. For, example, how many studie do we need that support that inflammation is key to all of us before we can get an off-label anti-inflammatory? Not one neurologist I know will suggest exercise yet the literature tells us it is one of the best neuroprotective and neurogenetic weapons we have in our arsenal.Things need to change in a big way; not only in finding a cure but in making patients more empowered to be partner in the search. To me, it seems like there exists a PD research wheel that spins just to keep itself going; does science ever step back and look at the larger picture? We need meta-analysis of research to identify the most promising ideas to pursue and then do so openly sharing in one place like a global database. Why do we have all these separate clinical studies? Huge differences in treatment options? PD does not recognize national boundaries, nor should science and medicine.
Conductor71's points are well taken. A global database would be something that the Parkinsons Movement could keep with well thought out, clear, and concise talking points. The scattershot approach needs to be changed by focusing more on the quality of the research vs. the quantiy of trials being developed. In the U.S. the number of trials that are never started or delayed because of non-participation of volunteers is staggering, yet, if we were to dig deeper, would we find many of the trials seeking the same endpoints? Do we need more money for research or do we need to make better use of the funds available?
One researcher I visited with, whom was diagnosed with PD about three years ago has said that things can be done cheaper, faster, better, with results in hand if only the vocabulary used were the same.
If we keep up with the research, develop a global database, continue seeking ways to be included in the overall research process, and most importantly of all, question what is being done but be willing to make recommendations that will positively impact the global PD community, I truly believe that we can create a culture of change that will eventually lead to a cure.
Israel and Conductor71, I agree totally with you both and am glad for the many excellent ideas in this thread. A global database is a very good idea and definitely something I think should be discussed further. I would also like to know more about the two initiatives in the US: Fox Trial Finder and PDF Research Advocates and how they could be brought to Europe.
I believe that the trial finder will come to Europe, it is a matter of when....... One of the problems with big initiatives like this is that there are no unified 'rules' globally.
A global database would be great, I was interested to hear Tim Berners Lee on TED talking about new web based ways to collect data, does anyone know more on this? It would also be interesting to know whether the commercial style web based data collection methods could be adapted to healthcare models, I think maybe there is discussion about this in the wider world of medicine.
Another source of data that has been mentioned is pharmacy based; that accurate global figures on those being treated for PD could be obtained this way, and on how they are being treated. Maybe also on adverse reactions etc. All of which are part of the jigsaw but not the whole.
I think any database that is created today should by default be thought as global. This is true for any commercial initiative. Should be even more so for any initiative aiming at building a commons, like a list of PWPs willing to participate to clinical trials.
Here is part of an answer I got from Fox Trial Finder's support when contacting them on the subject:
"We are collecting a list of individuals interested in the international functionality and would be happy to work with you on ideas and suggestion of how we can best upgrade and enhance the tool."
Anyone interested in pushing the idea of going rapidly global can contact them at support [@] foxtrialfinder [dot] org to give more momentum to this.
I would encourage any and all individuals and organizations to follow up on this and contact the Fox Foundation. There is true interest in moving to the international level. The key is to give more momentum to the cause and letting them know we are all willing to help to make the Fox Trial Finder a success in the U.S. and abroad. This would be a great place to start showing what Parkinson's Movement is about.
I feel i have to make a comment,there are some fantastic people with greater inntellects (not difficult),than me, searching for an answer to this damn illness but the thing that really bothers me is that a very large percentage of these folk have pd,where are the so called experts in this field,i apologise to those who do contribute but its nothing more than a job to some,(i speak from my own experiences),the comment that we have to work together has never been more appropriate.
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