Lois Brass, R.N., C.C.R.P.

How can interested patients learn more about the various clinical trials underway at Johns Hopkins CF Center?
By reading Partners in Discovery for one thing! Also, in the near future we will be launching a website for patients that will have a lot of information about CF research and a listing of current clinical trials. They can also visit the National Institutes of Health website and the Cystic Fibrosis Foundation website. And, of course, they can always ask one of us during their clinic visits, or call our office at 410-955-1167.

Why is it important to participate in clinical research?
To move the science forward, one step at a time, toward a cure. Along the way, research enables us to develop new therapies that help patients today, and will make someone's life better tomorrow.

How does the CF Center ensure the safety of clinical research?
First, by law, all research studies at Johns Hopkins and other academic medical centers must be stringently reviewed and approved by independent institutional review boards to be sure they are medically sound, ethical and appropriate. Also, independent clinicians who are members of the institution's Data Safety Monitoring Board monitor patient safety as the trial is running. And lastly, every one of us is committed to providing the best possible care for our patients, and safety is always at the top of our minds.

How long has CF clinical research at Johns Hopkins been going on?
Johns Hopkins was among the first hospitals doing CF gene therapy research. I've been here since our original gene therapy work began in 1996. Back then, the studies involved an 18-day inpatient stay. Our first gene therapy patient is now well into her 40s, healthy, and I'm still in touch with her. Looking back over time, I can see how far we've come in developing therapies.

Why are you involved in CF research?
People say the heart or the mind is the center of the body. To me, breath is centering. Breathing is a subtle and gentle motion. But in CF, it can be a true effort to move air in and out of one’s body. I know what we do at the CF Research Center makes a difference for people living with this disease. I am confident that through participation in research, we will find effective treatments and, one day soon, a cure.

What's the one thing you want CF patients to know?
There's reason to be hopeful. We respect our patients and families and hold them in the highest esteem. It is their participation in CF research that helps us find treatments for longer, healthier lives.