Israel Robledo was diagnosed with Parkinson's at 42 in 2007. After coming to terms with his diagnosis, he decided to do what he could, while he still could, and started advocating for awareness, education, and increased clinical trial participation among the PD community. Israel has been working on getting people involved on the clinical trial participation side, along with engaging people living with PD on the research side, from the development of trials to the dissemination of results, in order to get trials completed quickly and results out to the patient community sooner. Israel works as a special education teacher in Midland, Texas.
When the Fox Trial Finder was being launched in beta form in July 2011, many of us in the PD community committed to making it a success. A huge piece of the puzzle that had been missing was finally being put in place. Up to that point it was hit or miss when it came to what trials we may have qualified for based on inclusion/exclusion criteria, disease progression, location, etc. The Fox Trial Finder has made it easy to set up a profile indicating our preferences for participating. In just over a year, almost 20,000 people (with PD and healthy volunteers) have signed up on the Fox Trial Finder. This truly shows the willingness of the PD community and its supporters to get involved and make a difference.
The Michael J. Fox Foundation for Parkinson’s Research and its Fox Trial Finder has provided the quantity.
Has the Parkinson’s research community provided the quality?
Have any research projects been finished sooner than expected based on the number of people willing to volunteer? Will the results be shared with the PD community to give us a sense of the impact we have had on research?
Several success stories have been highlighted as to matches to trials and what the volunteers have experienced.
In asking the “quality” question I am seeking the information to give to people that have doubts about their involvement. The comment most often heard is “I’d like to get involved but I can’t afford to get to where they need me.” How can we assure people that are willing to do their part are actually being taken care of when it comes to transportation, accomodations, meals, etc? We are not asking to get paid to volunteer in clinical trials, only to have the costs associated with participating in these trials covered.
For lack of a better term, I will call it shared responsibility. Every facet of the research process has a responsible party that needs to be involved to make it work. To say that people with PD don’t want to get invovled is no longer a valid reason. The Fox Trial Finder numbers are showing otherwise… almost 20,000 and counting.
Many of us can’t afford the extra cost associated with being involved in a clinical trial. With the amount of funding that researchers require to conduct a trial, it makes no sense for them to announce a trial without knowing where the people needed to participate are going to be found and assuming that those that sign up can afford to stay in the trial for the duration. Require an amount in the budget request to cover costs associated with participating in the trial process, which will keep from extending the trial, or calling off the trial, or having to ask for more funding to keep the trial going because of lack of participation.
The quality will only come as a result of the shift in thinking that people don’t want to help -- perhaps the people that are willing to help need a little bit of help themselves to make it work.
In all fairness, there are some research sites that have done their part and taken into account the costs of participation. Don’t hesitate to ask the trial coordinator for any of the studies you may qualify for if there is funding available to help cover these costs. It is going to take more than these few to get more trials completed faster and the results out to the public sooner.
Learn more about Fox Trial Finder, the Foundation's online tool to match willing volunteers with the clinical trials in their area.