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Clinical Trial Participants Are Changing Lives

Ken Getz

Founder, CISCRP

Advances in medical treatments would not be possible without the patients participating in clinical trials, who often do not even benefit from the study.

Every year, millions of people take part in clinical trials and become partners in the process of developing new medical treatments. We call these individuals medical heroes. 

Participation in a clinical trial is a brave and selfless act because it always carries some risk. The trial may bring some hope for a treatment and even a cure; but it is unlikely to personally benefit a participant. Through their participation, medical heroes contribute valuable knowledge about the nature of a disease, its progression, and how and how not to treat it. Ultimately, future generations benefit from medical advances gained through clinical trials.

One last hope

For most people, clinical trials are an abstract concept with no personal relevance. They take a hard look at clinical trials for the first time when facing the prospect of a serious and debilitating illness for which no medication is available or adequate. Patients, their families, friends, and health care 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.

Learning the ropes

In 2003, 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, this nonprofit organization focuses its energy and resources on educating patients and the public about the clinical trial process and on enhancing study volunteer experiences during and after participation. 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, and to recognize and appreciate the medical heroes that inspire us.

Today, nearly 4,000 experimental drugs and therapies are in active clinical trials and that number continues to grow as improvements are made in detecting disease, in discovering new medical innovations, and in understanding and addressing the root cause of acute and chronic illnesses. At the very heart of all of this promising and life-saving and life-altering activity are medical heroes to whom we owe our deepest appreciation for their profound gift of participation.

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