Unless you are really new to the world of Parkinson's disease (PD), you have heard about the importance of participation by PWP's (and care partners, for that matter) in clinical research trials. There are other opportunities to make a difference, including participation in fund raisers, support groups, serving on committees, public speaking, and more, but there is nothing we can do that has more potential to help others with PD as well as ourselves than participation in research studies. By the way, care partners can sign up for many studies to be part of the "control group".
I have participated in quite a few of these myself, both locally and nationally. I can assure you that by investigating these studies, you are not automatically committing yourself to participation. You will have more than ample opportunity to decide if a particular study is a good choice for you. Here are the steps to follow:
- Use any of a number of "trial finder" sites (which I will list in this article).
- Complete the profile information that identifies the type of trial that interests you, such as your location, date of birth, gender, and medical history highlights. You may want to choose trial topics that have personal relevance to you or someone you know.
- Search for trials of interest for which you qualify. Many sites will allow you to register for an automated search that will provide a list of studies that match your profile (a good place to start). Every trial has parameters for inclusion/exclusion as well as a description regarding the goals of the research. Also, some trials are actively searching for recruits while others are in progress and not currently recruiting. Set parameters that will narrow your search so you don't spend a lot of time "spinning your wheels".
- Identify a "short list" of studies that interest you and make a list of generic questions you want to ask.
- Call or email the contact person listed in the study information. If you are a good "fit" for the program, ask your generic questions as well as those you may have specific to that study. You will be told what to do from that point if you decide to proceed.
Trial finder websites (click on each for a direct link):
- Fox Trial Finder
- National Institutes of Health (NIH) (comprehensive registry of federally and privately supported clinical trials conducted in the United States and around the world)
- NIH Clinical Research Trials and You (online resource to help people learn more about clinical trials, why they matter and how to participate)
For all our sakes, please do this today! You CAN make a difference!
Kirk & Linda Hall are Parkinson Disease Foundation (PDF) Research Advocates. To learn about this important program including how you can get involved, visit http://www.pdf.org/pair.