Great Strides 2007
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Top Ten Reasons to Participate in a CF Clinical Trial


1. You can do good simply for good’s sake.Robert Califf, M.D., professor of medicine and director of the Duke Clinical Research Institute recently put it this way:

“The most important reason to participate in a clinical trial is because of a belief that we can make the human condition better by learning through developing knowledge in a clinical trial. In fact, in our own patients, when we asked that question, altruism was the number-one reason for participating. It’s a noble thing to do to advance our knowledge of how to prevent and treat disease.”

2. You are vital to the drug development process.

More drug treatments are in development today than in the history of CF research. The CF Foundation has nearly 30 promising new therapies in its discovery and development pipeline. Any one of these—or a combination—could have a huge impact. No other voluntary health organization has ever invested so much in drug research.

As new treatments come along, only human volunteers participating in clinical trials can ensure that they are proven safe and effective. Basic science or animal research may suggest a human response, but it’s never assured until humans are studied.

3. You play a central role in improving medical care.

To develop the highest possible standards of care, researchers need to objectively compare proven strategies with new ones. Many questions about the best treatments for CF can only be answered in scientific studies. This ensures proof of what works and what doesn’t work, and what problems can be expected.

4. You have more opportunities than ever before to join clinical trials of new antibiotics, enzymes, and other drugs.

The Foundation recently announced a significant expansion of its clinical research network through awards to 60 sites in the United States and one in Canada. This will help the centers further develop their ability to conduct safe and effective CF trials. New sites are located in every part of the country.

5. You may actually stay healthier than those not doing trials over time.

People who choose to participate in CF clinical trials usually experience less lung function decline over a seven-year period than non-participants. These research results appeared in the American Journal of Respiratory and Critical Care Medicine (January 2006). In a six-year review of more than 13,000 patients, access to better health care through more office visits for clinical trials seemed to be the reason.

6. Your participation can open the doors to a new treatment and expert medical care.

Clinical trial participants get expert free medical care at leading CF health care facilities. More important, the treatment being investigated may be effective and provide a measurable benefit.

7. Your participation has measurable and meaningful results.

As a result of dramatic improvements in research and care, the predicted median survival age for people with CF is now 37 years. In 1955, most children with CF did not live long enough to reach elementary school. Today, nearly 45 percent of people with CF are 18 years or older.

8. You can help shape health policy choices, such as insurance coverage and funding, by participating in clinical trials.

Decision makers in health care rely on scientific evidence to support health policy choices. The data acquired through high-quality clinical trials provides the ammunition needed to ensure that CF medications are adequately covered by public and private insurance. The FDA approval process and future federal funding depend on the credible evidence obtained through clinical trials.

Currently, around 3,000 people are participating in CF clinical trials. To meet the current need for clinical trials already underway, at least 6,000 persons are needed by 2009.

9. You may not have the disease, but you could be a carrier, and as a healthy individual, you can still help.

More than 10 million Americans are symptom-free carriers of the defective CF gene. This means that you, your friends or family members could potentially have a child with CF.

Every year, about 1,000 children with cystic fibrosis are born in the United States. CF is the number one genetic life-threatening disease of children and young adults in the U.S.

Additionally, there are several clinical trials on clinicaltrials.gov related to CF that need healthy volunteers. Clinical studies rely on healthy volunteers to serve as control groups to achieve trial integrity.

10. You contribute to the health of others with cystic fibrosis.

Participating in a clinical trial is a unique opportunity to improve the lives of more than 30,000 children and adults living with CF. Important progress is made and valuable information is gained during trials, whether the treatment goes on to be approved and available to people with CF or it’s found to be ineffective.