Tuesday, September 3, 2019

Where to find the latest on Parkinson's research

There are a few really good places to look for the latest on PD research.

For day-to-day updates, along with interesting discussions about research, nothing beats PRIG (Parkinson's Research Interest Group) on Facebook.  I know that some people don't like FB, but it's the best platform for discussion where the conversation focuses on research topics, people know how to use it, and it's searchable.  Unlike the many FB PD support groups, this focuses on facts.  I have not found a more reliable, consistent source of information about PD research (and I read a LOT of online sources for PD information).

PRIG is tightly moderated, so there are no ads, no cat videos, no clickbait, and no support group sob stories.  PRIG is also a closed group, so you need to make clear that you aren't looking for a support group (answer the questions, and you're in).  There will be a link for more information for almost every story - sometimes more than one. I heartily recommend it.

For current information about active clinical trials see http://www.pdtrialtracker.info/

This is curated and updated by Sue Buff and Gary Rafaloff and provides a current picture on drug trials in particular.  Fair warning:  there is a great deal of information here that can really suck you in. 

In the Interventional tab for PDTrialTracker, (http://www.pdtrialtracker.info/interventional-trials-1.html)  scroll down to see Clinical Trials by Therapy Focus.

Finally, want to find a Clinical Trial that is in your area so that you can participate?  Then click on Recruiting Trials and scroll down to "Find Recruiting PD Trials in your Area."

The Science of Parkinson's blog/website, run by Dr. Simon Stott, takes deep dives into individual research topics, while defining all those terms (which you can skip over once you understand them).  Outstanding job of explaining why something might be important, along with what researchers found (and what related studies have found), and even what related research is being conducted now.  This blog is searchable, too.  And has a monthly research roundup.  I do not know how he has time to read everything, write extensively, and work full-time, too. This is a tremendous service to the PD community.

For more information about specific research papers, see Pubmed.  For more info about how to use Pubmed, see https://parkiesupport.blogspot.com/2017/12/research-news-about-pd.html.

For more information about specific clinical trials, see ClinicalTrials.gov.  For more info about how to use this website, see https://parkiesupport.blogspot.com/2019/02/using-clinicaltrialsgov.html.

I've written in the past about e-newsletters you can subscribe to, and I still do subscribe, but now I tend to go to PRIG, which cuts through the hype (example: this is a study in rats, not people; and a lot more investigation is required to find out if it's a useful treatment) and often provides links to related research.

There is a lot of work being done; it's certainly worth knowing what's being worked on, and why.

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