Research

One of the advantages of receiving care at a Cystic Fibrosis Foundation-accredited care center is that the doctors are aware of the latest treatments available and are involved in research to improve CF care.

One of the main goals of CF care is the prevention of lung damage.* Click image to enlarge)

The Cystic Fibrosis Center of Children's Memorial Hospital and Northwestern University enthusiastically participates in clinical research efforts to broaden the understanding of cystic fibrosis and help develop new therapies. Discovering and developing new and more effective treatments is critical in improving the health and life of individuals with cystic fibrosis.

The cystic fibrosis gene gives instructions on how to make the CFTR (cystic fibrosis transconductance membrane) protein. The CFTR protein has an important function at the membrane of cells in the body.* (Click image to enlarge)

Clinical research is essential to get new drugs through the development and approval process see Stages of drug development. Carefully conducted clinical trials are the safest and fastest means to find treatments that work and improve the health of those with cystic fibrosis. Interventional trials done under controlled conditions determine whether experimental treatments or new ways of using known therapies are safe and effective. Observational studies address health issues in large groups of people or populations in natural settings. We conduct both types of trials at our center see current studies approved and underway. Individuals with cystic fibrosis are needed to participate in clinical trials in order for research efforts to move forward. Any patient with cystic fibrosis is welcome to participate in research studies being conducted through our center if they meet the study criteria see who can participate in a given study and their primary CF care provider approves. Participation in any study is completely voluntary. If you have any questions about clinical trials being conducted or would like more information please talk to your Cystic Fibrosis Center doctor or contact our clinical research manager, Cathy Powers, at 773.880.8223 by phone or via e-mail at cpowers@childrensmemorial.org.

The pathophysiologic cascade refers to the steps that lead from the defective CF gene to the development of lung disease. New CF treatments target different steps in this cascade.* (Click image to enlarge)

Individuals can make a valuable contribution by participating in a clinical research study. However, it is important to have a thorough understanding of what you are undertaking and the possible risks and benefits, see The decision is yours. Although research volunteers might not directly benefit from participating in a study, many have felt their experiences were valuable in other ways. Many participants feel they are helping "the greater good" and are contributing to improving the treatment and lives of others with cystic fibrosis. Most enjoy the one-on-one time with the research staff. This individual attention offers additional opportunities to ask questions about health care management, even if unrelated to the research itself. Others use the opportunity to participate in research to examine their self care and keep on track.