Want to participate in PD research?

Much of PD research that patients and their loved ones are interested in has to do with drugs that may slow or even reverse the direction of the disease.  There are also studies about exercise and physical therapy, and even studies trying to find some commonality among people who don't have genes that predispose them to PD.  For the basics of how these studies operate, see ClinicalTrials 101.  

If you’re interested in participating in research, here are some good sources to help you find trials that are recruiting participants near you:

• If you’re in the UK (United Kingdom), Parkinson’s UK maintains a database of trials that helps you find trials near where you live. 
• If you live in the US, the FoxTrial Finder is a good place to start.  I’ve found them good for initial screening of trials, but their feature to notify me of new trials doesn't seem to work, so I regularly go to the following source, too.
• The source for most of this information is the ClinicalTrials.gov database, which includes most international trials as well as US-based trials.  This article explains how to use it.

What if I want to know about a trial that I heard about?

Suppose I want to know the results of a Clinical Trial that has finished?  

What if the Press has a story about a "breakthrough?  Where can I find more information?  

What trials are going on right now?

What if I'm only comfortable with trials without drugs?  See Observational Studies. Image from Pixabay.

Suppose I want to know the results of a Clinical Trial?

Here’s an ugly truth – even though Clinical Trials need pwp (and sometimes people without Parkinson’s), about 40% of these studies never publish their findings* (this is true for all research there, not just for PD).  Note that NIH and Michael J. Fox Foundation, among others, make publication of results a requirement of funding; wish all funders had such a requirement.

Fortunately, there are several ways to find out the results.  First, make sure the study has finished.  Instead of the status of Recruiting, it will be Completed in ClinicalTrials.gov.  (See this article for more information about using ClinicalTrials.gov.)

In all cases, you’ll search in Pubmed.gov, a database of biomedical journal research articles from the US and the international research community.  Usually a summary (called an abstract) of the article is available, with a link to the entire article;  sometimes the article itself is free, but sometimes it’s behind a paywall (meaning you must pay the journal to see the article).

You can search Pubmed with keywords, just like Google. Why not just use Google?  Because Google will give you many confusing records you'll need to weed through; Pubmed is easier  For a lot more about usingPubmed, see this article.  

1.  The easiest way to look for a possible journal article is to search for the NCT number (National Clinical Trial) on the Pubmed.gov database, since some researchers refer to the NCT number in their papers. Just enter the NCT number (found throughout the ClinicalTrial.gov record) into the search field at Pubmed.gov as in the example above. 

Here's an example of the start of an abstract that could result from such a search.  You can see the link(s) to the full article on the right.

2 . Entering the NCT number didn’t work?  Put on your detective hat.  From the Clinical Trial record for this study, get the name of the Principal Investigator (scroll down to the bottom of the Tab called Tabular View.) Then look for the title of the study (at the top); you may also have to read the summary paragraph that explains what the study is about.  From these, pull out what you think are the important keywords – for example, name of drug or device or technique used.

In the Pubmed.gov database, in the search bar put the keywords and the Principal Investigator’s name.  You may also need to add the term Parkinson.  See the example below:

There may be nothing, or multiple articles.  If the title doesn’t tell you enough to decide which is the right article, compare the Completion Date from ClinicalTrial.gov with the publication date of the articles; the publication date is usually at or later than the Completion Date; this was done in the example shown above, choosing the 2017 article because it comes a few months after completion.

3.  If none of the papers deal with the clinical trial, there's one more place. Often you'll find an email address associated with the Principal Investigator in the Clinical Trial database, so you could email this person to ask about publication of results.  There may be a paper that you didn’t find, or the paper may be in the process of being published, so you don't want to assume they didn't publish. Here’s an example email:  “I’ve been looking for the paper that describes the results of NCT12345678. Title of Study.  Can you help?” If they have a paper, they can provide the link.  If they don’t have a paper, you may have managed to make them feel a bit embarrassed, all while staying completely polite yourself, and not risking embarrassment.  (Take the high road.)   

4. By the way, if somebody gives you a DOI number (used in electronic publishing), go to dx.doi.org, enter the number in the search box, and you’ll go right to the summary and/or article. (Google will give you confusing choices.)

5.  If none of these work, you've struck one of the 40%.  Studies that use US government money are required to publish their results.  Shouldn't funders from companies, foundations, and universities require the same?

*Wyant, Kara J., Yasuda, Erica, Kotagal, Vikas. “The 10‐Year Landscape of United States‐Registered Parkinson Disease Clinical Trials: 2007–2016.” Movement Disorders, Wiley InterScience, 4 Oct. 2018,  onlinelibrary.wiley.com/doi/abs/10.1002/mdc3.12665.

Using ClinicalTrials.gov

ClinicalTrials.gov is the database; it contains virtually every clinical trial being done anywhere.  A clinical trial is a study of the use of drugs, devices, or procedures with human beings to improve human health, so if you want to know about studies being done now, this is the place to go.  Researchers in the US are required by law to describe most trials here; many researchers elsewhere do, too, since US medical journals won't publish their results unless the trial is listed here.  And anybody in the world can search this database.

(In fact, completed studies going back as far as 2007 are here, too, so there is a wealth of information available at your fingertips.)

Here's the basic search screen:

PWP and their families are often interested in finding studies to participate in.  You can pick studies that are recruiting (that is looking for people to participate), or not yet recruiting (but will be in future), Parkinson Disease (notice they've dropped the 's), and once you pick the country, it will let you pick a city and how far you're willing to travel from there.  Here's an example.  I searched for trials that are recruiting, about PD, in the US, and within 50 miles of New Haven CT.  The search box looks like this:

The list of results starts like this:

and if I click on one of the studies that interests me, I can find out much more.  The link for information about who to contact is highlighted in the example below.  

ClinicalTrials.gov publishes a great deal of information, including how to search, how to use search results, and how to read a study record (which is what you would use to find out more about this Phase 3 study example).

For definitions of some of the unfamiliar terminology, see the Fox Trial Finder website. 

One very important warning:  while this is a government database, the US government does not check studies for safety, or even that they are real clinical trials.  This means you need to ask a lot of questions about safety of both the drug/device/procedure, and any testing being done to monitor the trial. This also means you need to watch out for the slimy businesses that use ClinicalTrials.gov as advertising for their unproven and dangerous products.  Instead of testing their experimental products on you for free (a real clinical trial), they want thousands of your dollars (run!)  

For example, stem cells.  The real stem cell clinical trials accept a very small number of participants and take years to see results; the procedure requires brain surgery, and new neurons take years to grow from implanted stem cells.  The fake "trials" use unproven technology, accept any adult in the "trial," claim miracles, and don't even have a good track record with basic sanitation - but they want your money.  As I said: grab your wallet and run.