Monday, January 15, 2018

Clinical Trials - research into PD causes, treatments, and cures



Should I be involved in clinical trials?  What about my family – they don’t have PD but they’d like to help.  What if I don’t want to give up the meds that I’m already taking?

Guess what?  Everybody who is an adult and can give “informed consent” can be involved in a clinical trial – PWP (people with Parkinson’s), family and friends, PWP who aren’t taking meds, PWP who are taking meds, PWP who aren’t sure they want to try a brand new drug for safety reasons, PWP who want to test new treatments on themselves.   Not every clinical trial is appropriate for every person, but if you want, you can find a way to be a part of research into the causes of PD, improved living with PD, prevention of PD, slowing or reversal of progression, and someday... a cure or cures.

What exactly is a clinical trial? Here’s Clinical Trial 101 from Michael J. Fox Foundation, probably the most aggressive PD research funder:  https://foxtrialfinder.michaeljfox.org/understanding-clinical-trials/clinical-trials-101/

New treatments, including new medicines, are not possible without clinical trials; some kinds of clinical trials demonstrate whether something done in the laboratory can be done in humans – safely and successfully. 

Here's a description of research results for 2017 that includes clinical trials:  https://www.michaeljfox.org/foundation/news-detail.php?closer-to-cure-download-our-2017-research-year-in-review

Not all clinical trials are testing new treatments; some are observation – surveys, telemedicine (can you treat PD from a computer-to-computer session similar to Skype?), keyboarding software (Tappy) that tracks the way you type by looking for patterns that can help diagnose PD and its progression.  For these kind of studies you don’t have to travel. 

Other clinical trials require you to go to a specific medical center (you decide what’s too far for you to travel), to go a certain number of times a year for examinations, tests of what you can do, maybe blood or spinal puncture tests, maybe imaging tests.  Informed consent means that you are told what you might get out of it, and any risks. You decide if you want to participate, if any risks are acceptable to you; some studies require blood draw or spinal fluid tap, but there may be imaging studies that insurance wouldn’t cover, or the chance to try a new drug. Sometimes what are called “healthy controls” are needed – people without PD – which is one of the ways family and friends can help.

One observational study that everyone can participate in is Fox Insight, “an online clinical study where people with Parkinson's disease and their loved ones share information that could transform the search for better treatments.”  You enter lots of information and answer surveys every 90 days.  Your personal identifiers are separated from the data and then it can be used by researchers.  If you have 30-60 minutes four times a year to answer questions online...  https://foxinsight.michaeljfox.org/

Another observational study is  the Brain Health Registry, which is looking into PD, Alzheimer's, and other brain disorders at http://www.brainhealthregistry.org/how-it-works This works similar to the Fox Insight study.  I participate in both these studies. 

Where can you find out about Clinical Trials?  The following are three possible websites you might want to look into.


  • https://foxtrialfinder.michaeljfox.org/ This website focuses on PD. I’ve found the information clear, and you can contact researchers directly via FoxTrialFinder.  You also receive periodic emails about new trials that might interest you.
  • https://www.clinicaltrials.gov/  This website is not restricted to just PD.  While the US government maintains this database, the government has not evaluated the studies.  In fact, a few listings are not really clinical trials at all – the company hopes that you will pay for them to experiment on you.  A real clinical trial is careful to limit those who participate to those who fit very narrow parameters, so the scientists can see clearly what is related to the results.  Even more important, in a real clinical trial, all tests are paid for by the trial, not by you.  “Patient-funded research” is aimed at profit, not at genuine research.  (I will be writing about stem cell “research” like this in a future post.)
  • http://www.centerwatch.com/   Information here doesn’t seem to be as detailed as on the previous two websites.  You have to contact the researchers for more information, but you can do that directly from this website, which is also not restricted to PD.


In all cases, you decide if you want to participate. 

Image from Pixabay.

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