Clinical Trial Participants’ Selfless Gift to Medicine

By volunteering to participate in clinical trials of new and experimental treatments, medical heroes give society valuable knowledge about the nature of disease, its progression, and how — and how not — to treat it. Participation always carries some risk, offers some hope for a treatment, and even offers some hope for a cure, but it is likely to bring no direct personal benefit to those who volunteer. As such, medical heroes ultimately give a gift that will benefit future generations of patients.

Facing the challenge

For the vast majority of people, clinical trials are an abstract concept that have little to no personal relevance. Most people take a hard look at clinical trials for the first time when facing the sudden 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 healthcare providers must gather information quickly to understand how the clinical trial process works, the requirements of participation as defined by the study protocol, and whether participation is appropriate. This rush to navigate and master the unfamiliar terrain of clinical trials invariably feels overwhelming and confusing, and once in a clinical trial, many volunteers find the requirements and demands of participation difficult to manage.

Raising awareness

In 2003, the Center for Information and Study on Clinical Research Participation (CISCRP) was founded to provide outreach and education to those individuals considering participation in clinical trials and their support network. Based in the Boston area, this nonprofit organization serves the global community of patients and the public by raising awareness and providing education about clinical trials and by enhancing study volunteer experiences during and after clinical trial participation. Our many events and services are designed to improve public and patient literacy; to engender feelings of empowerment and control; to ensure more informed decision-making, improved convenience, and accessibility; and to recognize and appreciate the medical heroes that inspire us. This special USA Today supplement also plays an important part in raising awareness and literacy. It is a reference resource offering an introduction to clinical trials and providing valuable information to help you and your support network navigate the participation process.

At the present time, nearly 6,000 experimental drugs and therapies are in active clinical trials, and that number continues to grow as improvements are made in detecting disease, discovering new medical innovations, and understanding and addressing the root cause of acute and chronic illnesses. At the very heart of all of this promising, lifesaving, and life-altering activity are medical heroes to whom we owe our deepest appreciation for their profound gift of participation.

Written by: Ken Getz | Founder and Chairman, CISCRP