Founder and Chairman, Center for Information and Study on Clinical Research Participation, and Associate Professor, Tufts University School of Medicine
This supplement is part of an ongoing nationwide effort to both raise awareness of the importance of clinical research, and to increase public appreciation for the millions of people who participate in clinical trials every year in the service of advancing medical knowledge.
Today there are more than 4,000 experimental treatments being used in active clinical trials. Every year the number of promising new medical therapies grows, as more is learned about detecting, diagnosing, and treating disease. Most importantly, the success of all 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.
Regular People, Medical Heroes
We call these brave volunteers “medical heroes”, and they can be found everywhere. We are all indebted to them. Medical heroes are your parents, family members, friends, colleagues, and people you’ve never met who have chosen to give the extraordinary gift of participating in clinical research. Their decision to volunteer is a selfless act for two reasons: One, because participation in a clinical trial always carries risk; and two, because it is likely that for many study volunteers it will bring no direct personal benefit.
Ultimately, future generations are the ones who benefit most. Through the process of participating in the trials, medical heroes profoundly contribute to society’s collective knowledge about the nature and progression of diseases, and how to treat them.
An Unexpected Opportunity
For the vast majority of people, the idea of clinical trials is a new and unfamiliar one. Most people first learn of them at the same time they are diagnosed with a serious illness for which no medication is available or adequate. Typically, patients, their families, friends, and health care providers must gather information quickly to make decisions about whether to participate. This rush to navigate the unfamiliar terrain of clinical trials is often overwhelming and confusing.
17 years ago, the Center for Information and Study on Clinical Research Participation was founded to provide outreach and education to these individuals and their support network considering participating in clinical trials. Based in the Boston area but with a global reach, this nonprofit organization focuses its energy and resources on raising general awareness, educating patients and the public, and enhancing study volunteer experiences before, during, and after clinical trial participation.
We hope that this educational supplement will be a valuable reference resource offering an introduction and insight into the clinical research process and the decision to participate. We hope that you find it to be both informative and inspiring.
Ken Getz, Founder and Chairman, Center for Information and Study on Clinical Research Participation, and Associate Professor, Tufts University School of Medicine, [email protected]com