A Salute to the Unsung Medical Heroes of Clinical Trials
Advocacy Who are the individuals that participate in clinical trials and what is being done to guide them along their crucial journey?
At this time, nearly 4,000 experimental drugs and interventions are in active clinical trials. The number of promising new drugs and medical therapies grows annually as improvements are made in understanding, detecting and treating disease. But the success of these innovations — ultimately measured by improvements in the quality of patients’ lives and by the availability of new treatments and cures for unmet medical needs — would not be possible without clinical trial volunteers. We call these brave individuals medical heroes. They can be found everywhere, and we owe them our deepest gratitude.
Who are our heroes?
“Medical heroes are mothers and fathers, siblings, children, friends and colleagues who have chosen to give the extraordinary gift of participation in clinical research.”
Medical heroes are mothers and fathers, siblings, children, friends and colleagues who have chosen to give the extraordinary gift of participation in clinical research. Their decision to participate is a selfless act, an altruistic gift. Participation may bring hope to patients and their loved ones. But participation always carries risk, and it is likely that for many study volunteers it will bring no direct, personal benefit.
Ultimately, future generations are the direct recipients of the gift of participation. Medical heroes — through their participation and partnership with the clinical research enterprise — profoundly contribute to society’s collective knowledge about the nature of disease, its progression and how, or how not, to treat it.
Why is education important?
For the vast majority of people, the idea of clinical trials is an unfamiliar concept. Most people are exposed to clinical trials when faced with the abrupt and often unexpected prospect of a serious and debilitating illness for which no medication is available or adequate. Typically patients, their families, their friends and their health care providers must gather information quickly to make decisions about whether to participate. This rush to navigate the unfamiliar terrain of clinical trials invariably feels like an overwhelming and confusing undertaking.
Sixteen years ago, the Center for Information and Study on Clinical Research Participation (CISCRP) was founded to provide outreach and education to those individuals and their support network considering participation in clinical trials. Based in the Boston area, but with global reach, this nonprofit organization focuses its energy and resources on raising general awareness, educating patients and the public and enhancing study volunteer experiences during and after clinical trial participation.