July/August 2009

CF mom Marissa Stevenson gives daugher Avery (8 months) a breathing treatment.
Marissa Stevenson gives daugher
Avery (8 months) a breathing

A "Surf Session" for Babies?

Amazingly, surfers have unknowingly held a key to prolonging the length and quality of life for people with cystic fibrosis. Several years ago doctors noticed that CF patients who surfed had healthier lungs than those who did not.

“What they say about the surfers is definitely true,” says Mary-Leigh Phillips, a 26-year old with CF. “Any time I’m at the ocean — either swimming in the water or running along the beach breathing in the salty air — I can tell a difference in my lungs. First I have a very productive cough, and then over the next few days, I don’t need to cough as much.”

Armed with this knowledge, the CF Foundation invested $1.2 million to fund a study in Australia to find out if inhaling an aerosolized saltwater solution – almost twice as salty as the Atlantic Ocean — would help keep the lungs of CF patients healthy.

An International Clinical Trial

The clinical trials revealed that inhaling the super salty mist, called hypertonic saline, had a powerful effect on rehydrating the lining of the lungs of CF patients, allowing them to more easily cough up bacteria-contaminated mucus. Now a staple in the CF treatment regimen, many CF patients around the world use hypertonic saline every day.

The original study in Australia explored using hypertonic saline in patients age six years and older. Because of the overwhelming success of this treatment, and because scientists are discovering the importance of preventing the onset of lung infections during infancy and early childhood, researchers are now conducting clinical trials of hypertonic saline in children as young as four months.

A New, Cutting-edge Study in Infants

The new Foundation-supported trial is called the Infant Study of Inhaled Saline, or ISIS. The purpose of ISIS is to determine if hypertonic saline is as safe and effective in infants as it is in older CF patients.

“ISIS is the first time that an agent, such as hypertonic saline, has been studied in CF in children of this age. It’s definitely cutting-edge,” says Stephanie Davis, M.D., an associate professor of pediatrics at the University of North Carolina School of Medicine and one of three principal investigators of the ISIS clinical trial.

“By starting these types of therapies early on, we hope the impact will be seen later in life, either by improved lung function or improved quality of life.”

Led by Davis and her co-principal investigators Margaret Rosenfeld, M.D., and Felix Ratjen, M.D., the ISIS trial will be carried out at 28 care centers across the country, and two additional centers in Canada. Sites are currently opening for enrollment. To find out which sites will be participating in the trial, click here.

“We’ll be participating in the trial for a year,” says Marissa Stevenson, mother of 8-month-old Avery who has CF. “We found out about the trial from Dr. Davis. It was tough at first to see the nebulizer on Avery’s face, but we’re getting used to it. I can tell a difference because Avery coughs more after the treatments. I really feel like she’s keeping her lungs healthy.”

If successful, ISIS will highlight the importance of preventative care in CF. Doctors could prescribe hypertonic saline early in life – even before patients show symptoms of lung infections — and considerably slow the cycle of lung infection and inflammation that leads to severe lung damage.

“ISIS has really been the most exciting project I’ve worked on as a physician,” says Davis. “This trial has the potential to really change long-term outcomes in young children with CF.”

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