Soania Mathur and her husband, Arun
In an article published on the Huffington Post today, Soania Mathur writes about clinical trial participation and its critical importance to speeding the development of needed treatments to patients' hands. Soania, a member of The Michael J. Fox Foundation for Parkinson's Research Patient Council, shares how all of us can play a meaningful role in driving research progress.
"What the millions of us affected with a chronic, disabling disease need is quite simple yet unbelievably complicated - better treatments and ultimately, a cure. We often think of the search for these elusive endpoints as being far removed from us when in fact, we need to be an integral part of the process. The answers are essentially, in all of us.
A clinical trial is a term we have all heard and it encompasses many different types of protocols, some observational while others are interventional. We know that these studies are a necessary part of research but how significant is their role? To put it into perspective, for a new treatment for a neurologic disease to get from the lab counter to the pharmacy shelf, it can take anywhere from 15 to 30 years and about $1 billion of investment. Approximately half of the time it takes for that treatment to reach patients, is spent in clinical trials. Yet this is the point at which problems arise due to significant recruitment issues. Close to 85% of all clinical trials are delayed due to recruitment difficulties and a staggering 30% fail to enroll a single subject. An incredible waste of resources and most importantly time - time that those of us facing the burden of chronic disease would rather spend fully functional and productive. Fully able to contribute to our families and community in a way that one can only do when not in the depths of disease.
Undoubtedly, participation in clinical trials requires a certain amount of selfless commitment but it can also be a rewarding experience as it allows those that dedicate their time and energy to be a part of something much larger; something that has the potential to make a life-changing difference in the lives of many. Although the need for participants in clinical studies is fairly well known certainly to those of us in the chronic disease community and to some degree in the general public, there continues to remain a significant shortage of subjects."