Individuals With Cystic Fibrosis Team Up With the Experts to Fight Infection the Virtual Way

NEW YORK -- The first 2004 cystic fibrosis (CF) Virtual Patient Education Day live Web cast, hosted by the Cystic Fibrosis Foundation, Children's Hospital of New York-Presbyterian, and Columbia University Medical Center, will be held on Monday, Jan. 12, 2004.

The focus of the Virtual Patient Education Day live Web cast is "How to Avoid Germs in CF" and is intended to give people with CF and their families a chance to learn about the reason behind initiating -- and the importance of observing -- the current infection control guidelines for CF. There will be two live Web casts on Jan. 12; the first Web cast will be at 7 p.m. ET (6 p.m. CT, 5 p.m. MT, 4 p.m. PT). The second live Web cast will take place at 9 p.m. ET (8 p.m. CT, 7 p.m. MT, 6 p.m. PT).

"This Web cast comes at a perfect time as we work to implement the new CF infection control guidelines in every CF Foundation-accredited care center in the United States," says Lisa Saiman, MD, MPH, professor of clinical pediatrics at Columbia University College of Physicians and Surgeons and co-chair of the current CF infection control guidelines. "Over the past several years, we have learned a great deal about how to prevent people with CF from getting infections and how to reduce possible spread between patients. By using the technological advances of the web, we are able to bring our expertise and knowledge to our patients, therefore reducing their health risks while keeping them informed at the same time."

Up to 1,000 patients per live Web cast, or a total of 2,000 people, may pre-register and access the Virtual Patient Education Day live Web cast through the CF Foundation's Web site at www.cff.org. Featured presenters include Dr. Saiman and Lynne Quittell, MD, associate clinical professor of pediatrics and medicine at Columbia University College of Physicians and Surgeons and director of the Cystic Fibrosis Center at Columbia University Medical Center.

"The importance of infection control, contrasted with the need to keep our patient community and their family members informed about the latest progress in CF research and care, has been a challenging dilemma for the CF Foundation," says Preston W. Campbell III, MD, executive vice president of medical affairs for the CF Foundation. "We developed our infection control guidelines several years ago and although they are important to follow, they do keep individuals and families from group interactions with physicians and caregivers. We think this Web cast is a great way to create this sense of community while discussing a critically important topic: avoiding germs in CF. I look forward to listening to the Web cast myself and am grateful to the CF care center staff at Children's Hospital of New York-Presbyterian for their leadership and participation in this endeavor."

Interested participants may pre-register and enter their questions now on the CF Foundation's Web site at www.cff.org by clicking on "Virtual Patient Education Day" banner and entering code #PT112. Those unable to participate or access the live Web cast will be able to access an archive of the event via the CF Foundation's Web site as of Jan. 15. Questions may still be submitted after the Web cast airs and will be answered on a monthly basis on the www.cff.org site. The Virtual Patient Education Day Web cast is made possible through an unrestricted educational grant from Genentech Inc.

CF is a genetic disease affecting approximately 30,000 people in the United States. A defective gene causes the body to produce abnormally thick, sticky mucus that leads to chronic and life-threatening lung infections and impairs digestion. When the CF Foundation was created in 1955, few children lived to attend elementary school. Today, because of research and care supported by the CF Foundation with money raised through donations from individuals, corporations and foundations, the median age of survival for a person with CF is in the early 30s.

The mission of the Cystic Fibrosis Foundation is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. For more information on CF, call (800) FIGHT CF or visit www.cff.org

Children's Hospital of New York-Presbyterian, Manhattan's only hospital dedicated solely to the care of children, has built a reputation for more than a century as one of the nation's finest children's hospitals. Home to some of the world's leaders in pediatric care, the Children's Hospital of New York- Presbyterian includes Morgan Stanley Children's Hospital and the New York Weill Cornell Children's Hospital. The combined institution is the largest provider of children's health services in the tri-state area, offering the best available care in every area of pediatrics -- meeting the special needs of children from infancy through adolescence in every medical and surgical discipline, including the most complex neonatal and critical care, and all areas of pediatric surgery and surgical subspecialties.

Source: Cystic Fibrosis Foundation