Every year, millions of people make the courageous decision to participate in clinical research and become partners in the process of developing new medical treatments. We call these brave individuals “medical heroes” because they have given the extraordinary gift of their participation in the ongoing battle to understand, fight, and cure disease.
Ken Getz
Founder, CISCRP, Research Professor
Medical heroes can be found everywhere. They are parents, grandparents, siblings, children, friends, colleagues, and ordinary people who have chosen to give the extraordinary gift of participation in clinical research. Their decision to participate is a selfless act, an altruistic gift; there are always risks but no guarantee that an investigational treatment will work.
Still, medical heroes help us as a society gain valuable knowledge about the nature of disease, its progression, and how — and how not — to treat it. Future generations are ultimately the direct recipients of this gift.
Most people — particularly those in under-served communities — are not aware of, and may not have easy access to, clinical research. Most 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, friends, and their healthcare providers must gather information quickly to make decisions about whether and where to participate. This rush to navigate the unfamiliar terrain of clinical research can be overwhelming and confusing.
Raising awareness
In 2004, 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. This special nonprofit organization focuses its energy and resources on raising general awareness, on educating patients and the public, and on 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, to recognize and appreciate medical heroes, and to engage them as partners in the clinical research process.
At the present time, 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 causes of acute and chronic illnesses. At the very heart of all of this promising activity are medical heroes to whom we owe our deepest appreciation for their profound gift of participation.