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The Priceless Gift of Clinical Trial Participation

Ken Getz

Founder, The Center for Information and Study on Clinical Research Participation (CISCRP); Professor, Tufts University School of Medicine

New medical discoveries made during the past decade — fueled by improvements in detecting disease, and new understanding about the root causes of diseases and how to treat them — have moved more than 4,000 experimental drugs and interventions into active clinical trials globally.  

In the past several months alone, the world has seen the public and private sector collaborate at unprecedented levels and speed to develop several hundred new vaccines and treatments in response to the COVID-19 pandemic.

But the ultimate success of all of these innovations depends entirely on the millions of people who volunteer to participate in clinical trials. These are everyday people who choose to give the extraordinary gift of participation in clinical research.  

Their decision to participate is a selfless act — an altruistic gift — because it always carries risk and is unlikely to bring any direct personal benefit. Through their participation and partnership with clinical research professionals, study volunteers profoundly contribute to society’s collective knowledge about the nature of disease, its progression, and how to treat it.  Ultimately, future generations are the direct recipients of the gift of each clinical trial volunteer’s participation.  

Crash course

Although there has been a lot of news coverage about treatments and vaccines in clinical testing for COVID-19, the vast majority of people know very little about actually participating in clinical trials. Most people stumble upon clinical trials when faced with 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 identify an appropriate clinical trial, and to determine whether to participate. This rush to navigate the unfamiliar terrain of clinical trials can be overwhelming and confusing.

A valuable resource

In 2003, the Center for Information and Study on Clinical Research Participation (CISCRP) was founded to provide outreach and education to people considering participating in clinical trials. Based in Boston, but with global reach, our nonprofit organization focuses its energy and resources on raising awareness, educating patients and the public, and enhancing study volunteer experiences during and after clinical trial participation. 

This special supplement is part of CISCRP’s ongoing effort to raise public awareness about the importance of clinical research, and to increase public recognition of the millions of study volunteers and clinical research professionals who, together, help advance medical knowledge.   We hope you find this campaign informative and inspiring.

At the very heart of successfully developing new life-saving and life-changing treatments and vaccines lies the clinical trial volunteers to whom we owe our deepest appreciation for the profound gift of their participation.

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