I’m going to explain an idea that is so crazy that it just might work. What do I mean by this? Well, the reality is that clinical trial participation in Parkinson’s Disease-related trials remains woefully low. Organizations, such as the Michael J. Fox Foundation for Parkinson’s Research, have a laser-focus in getting us new treatments and the elusive cure taken care of as quickly as possible. The Fox Trial Finder trial matching tool has been effective in getting more than 30,000 people with Parkinson’s Disease and without, to set up a profile to get matched with clinical trials that meet their personal criteria. There have been wonderful success stories, and that is a testament to the power of the Fox Trial Finder. As much as the MJFF puts into urging people to get involved in the research process, there is only so much that they, as an organization, can do. It is up to us in the patient community to take the next step in bridging the gap between those trials that are meeting recruitment numbers and those that need help to get trials completed on time.
The idea is nothing more than what we have been doing when we talk to, visit with, share with, urge someone, recommend to someone, a clinical trial that we have participated in and want to let others know about our experience. If it has been a positive experience and we feel that the clinical trial (protocol) is worth sharing with others in the patient community, then we don’t hesitate to help with recruitment to help complete the trial. If the experience has not been what you expected, sharing the reasons for the negative experience can help in recruitment as well. How so? First, by sharing with others what your expectations were while being involved in the trial. Second, by being able to express the shortcomings of the trial, primary investigator, trial site, etc. Third, by recommending ways that the trial can be improved in order to be able to help recruit participants to the trial.
What we in Parkinson’s Movement, as a patient-led organization, propose is to develop a database using a survey that is to be completed by people with Parkinson’s Disease, and without, giving feedback on their clinical trial participation experience, and by virtue of recommending the clinical trial (or not) and rating the clinical trial site, allow anyone interested in participating in a clinical trial the opportunity to hear specifics about the trial. It is a true grassroots effort that will work if we share our experiences with others and allow them to make an informed decision about participating.
We can definitely influence Parkinson’s research in more ways than one. We already do it by signing up for trials and meeting our commitment to these trials. We can do it by recommending trials to others, which most of us already do by word-of-mouth, but keeping the information in a database to share with as many as possible. We can influence research by “directing traffic” to those trials, sites, and investigators that have the best interest of the patient community at heart and take care of the needs of the volunteers. Another important aspect is the ability to let the research community know which trials are of interest and importance to us. The power of the Parkinson’s patient community to influence research has by no means reached its potential. And… because Parkinson’s organizations (whether regional or national) cannot recommend one trial over another, it only makes sense that the patient community take the lead in this initiative. The beauty of it is that all of us, whether we are eligible to volunteer or not, can be advocates for this change and help spread the word about this initiative.