Have you asked this question? I often speak to various Parkinson’s support groups and ask the individuals to get involved with clinical trials, or sign up to be a part of Fox Trial Finder (FTF), a data base created by the Michael J Fox Foundation (MJFF) designed to help People with Parkinson’s (PWP) find clinical trials, as well as provide Parkinson Research Centers a registry of clinical trial volunteers.
Like an evangelist on the pulpit, I ask the multitudes to step forward and get involved, “For the betterment of their fellow PWPs”. Some charge forward, and sign up without hesitation. Others lower their heads rather solemnly, and head home. .
Parkinson disease is a degenerative neurological condition, and is often categorized as a movement disorder. The average age of on set is 60 years old. The decision to enroll in a clinical trial should always be considered thoughtfully, and not rushed into. There are various reasons that prevent PWP from participating in trials, and many of these reasons are respected. I can see an individual contemplating the various factors that go into this decision, ….. and in silence,…. asking the question, “What will the trial do for me”?
Some might judge this thought as selfish. I say;”Judge Not”. However, I sadly share that the disease generally progresses more swiftly than any of us would want. And I also say with conviction; “Your participation in clinical trials can bring you and others a better quality of Life, NOW!
In a recent presentation to a Parkinson support group attended by forty participants, over half of those in attendance afflicted with PD signed up to volunteer for clinical trials. This was dramatically more than my previous appeals. Was it my delivery? I gave the same old jokes. I’m not getting any better looking. But I believe this number may be related to the belief that their participation will bring them a “personal benefit” in their battle with Parkinson’s.
Although statistics aren’t available, it is widely acknowledged that various trials have been prematurely concluded due to “lack of participants”.
I find this to be unfathomable today.
The speed in which the first 10,000 volunteers were registered on FTF is a testament to the system developers, as well as the patient community. It should also not go unnoticed, that agencies such as the Parkinson Disease Foundation and others, have established programs that have helped erode stigmas that prevented patients from greater involvement in trials sooner.
OK ~ Now What? ~ Getting to Trials
Actual use of the FTF to find trials has been slower than desired. Perhaps it should be acknowledged that the FTF is new, and patients need time to use it and assess how it can best serve them. Monitoring its use is also difficult to measure. There is much evidence that the MJFF team has been extremely dedicated at getting the FTF to it’s full potential. The FTF is not the only initiative attempting to increase trial participation. Various agencies deserve recognition and praise for playing instrumental roles in creating educational programs that emphasizes the importance of research, as well as provide research funding.
There are “Grassroots Advocacy Groups” that have organized patients to participate in “Group Trials”. This level of participation has already made an impact on bringing trials to a speedy conclusion. A group trial program was launched last year in cooperation with Beth Israel Deaconess Hospital in Boston, Massachusetts under the auspices of Dr. Chris Gibbons. He reported that, “…….three visits to our center involved more than 17 people in several different studies……… With multiple studies running simultaneously, we have collected the equivalent of 44 patient-visits worth data, a task that typically requires a full year of recruiting. In the process, you have accelerated the pace of research and allowed us to obtain preliminary data in less than half the time….
Last but not least, our Blog Captain, Israel Robledo, has been conducting a campaign to bring to the attention of appropriate federal agencies and other Clinical Trial leaders, that funding the processes that “get the patient to the trial”, can be as important as funding the trial itself. (See earlier Blog and comments)
It Takes a Village
I spoke to a prominent researcher at a notable ResearchCenter and asked about how the FTF has affected their recruitment practices. Without hesitation or remorse, the researcher shared that it had not been used. My heart sank, as I looked for a justification for this position.
I thought, ……Well after all, this tool is acknowledged to be rather young. And who among us doesn’t go back to “the way we always have done things”. I couldn’t help but think that institutionally, there was an acceptance that the lack of trial participants was the norm. “You understand.”
Trial Results Leading to Significant Movement Towards a Cure
Over five years ago, I attended an informative Parkinson symposium. Speaker after speaker shared their Parkinson research efforts, lifting the spirits of those in attendance. As the Q & A session was coming to a close, one of the speakers felt it important to share this remark; “I think it’s important for everyone to know that the results of these research studies have many years yet to be proven conclusive and there is no cure immediately on the horizon.” ……….Er……..Regardless of the truth in what was said, probably not the best close.
But allow me to challenge us all on the final piece of the equation,…………the missing link…… “What results do we expect from the current research, and when will it be available?” It has been said that it can take as much as ten years, or more, for a successful study to go from trial to treatment.
I’ve had the privilege to talk to researchers that whisper about impending breakthroughs, which will lead to more breakthroughs, followed by symptomatic relieving medications. I’ve had the privilege to talk to researchers that whisper about identifying bio markers that will lead to the diagnosis of Parkinson’s disease in its early stages, thus leading to neuroprotective treatments. These whispers have included the four letter word, …….SOON…….Very Soon. I believe this to be true.
So “What in it for Me?
The patient community has never been more mobilized to be a partner in the pursuit of the cure. Please join me in extending our thanks to all those who have participated in clinical trial or helped raised money towards research. Additional thanks to those who have encouraged their representatives to pass legislation that removes barriers that impedes research, or have made appeals for an increase in public funding that improves quality of life and moves us towards a cure.
So if you ever stop and feel the need to ask the question, “But will participating in a clinical trial help ME?” DAMN RIGHT IT WILL!
Steve DeWitte was diagnosed with Parkinson in March 2005 at the age of 48. He founded the Parkinson’s Young On Set Support Group of CT inc., and is joined by nearly 100 active members, trying to make a difference and find the cure for Parkinson’s disease.