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Cystic Fibrosis Foundation Launches Ambitious Effort to Increase Participation in Clinical Trials

Research Volunteers Especially Critical for Rare Diseases Such as CF

(Bethesda, Md.)—The Cystic Fibrosis Foundation today announced an important initiative to double the number of people with cystic fibrosis who participate in clinical trials over the next two years.

“To help potential new drugs for CF move swiftly from the research stage into the hands of patients who need them, we need more people with cystic fibrosis to take part in clinical trials,” said Robert J. Beall, Ph.D, president and CEO of the CF Foundation. “Without patient volunteers, research and progress are not possible.”

The CF Foundation’s effort is at the forefront of a new trend to spearhead awareness of the need for more people to join clinical trials. This is particularly important for those with rare diseases. The CF Foundation will work with its nationwide network of 115 care centers to deliver a call to action to encourage people with CF to learn about—and consider participating in—one of the many clinical trials now underway.

The CF Foundation, with the help of volunteers, donors and research centers, has successfully built a robust drug pipeline with nearly 30 promising therapies to treat CF. Currently, several Phase 3 trials are recruiting large numbers of volunteers to test new therapies. To successfully complete these trials alone, more than 1,000 people with CF are needed.

To raise awareness of this need, the CF Foundation has produced educational materials for people with CF and their families, launched a toll-free clinical trials hotline (877) 8CF-JOIN and created a special section on its Web site to heighten patient awareness about where trials are taking place and explain how to become involved (

“We are on the brink of many exciting new treatments for cystic fibrosis,” said Preston W. Campbell, III, M.D., executive vice president for medical affairs of the CF Foundation. “Our challenge is to find enough patients to join clinical trials to keep the research briskly moving forward.”

A study commissioned by the CF Foundation found that most people with cystic fibrosis do not know about the critical need to volunteer for clinical trials. When respondents were asked why they have not participated in a trial, a majority said that no one had asked them. The goal of this initiative is to make sure every person with CF understands the importance of clinical trials and considers joining one.

In addition to changing patient attitudes about clinical trials, the CF Foundation is also increasing the number of care centers available to conduct high-quality clinical trials. This year, the Foundation awarded more than $3 million to 45 centers nationwide to further develop their capabilities to conduct safe and effective clinical trials. The Foundation’s number of clinical research sites has grown from 18 to a total of 63 today—and further expansion is planned.

The CF Foundation is the primary sponsor of critical research that is making tremendous advances toward a cure and control of CF. Virtually all of the approved CF drug therapies available today, including Pulmozyme® and TOBI®, were made possible because of research funded by the CF Foundation and patient participation.

Cystic fibrosis is a genetic disease that affects about 30,000 adults and children in the United States. It causes life-threatening lung infections and serious digestive complications. More than 10 million Americans are symptomless carriers of the CF gene. Young people die every day from this disease.

About the Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation is the leading organization devoted to curing and controlling cystic fibrosis. Headquartered in Bethesda, MD, the Foundation funds CF research, has more than 80 chapter and branch offices throughout the country, and supports and accredits a nationwide network of 115 CF care centers, which provide vital treatments and other CF resources to patients and families. For more information, visit

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