Cystic Fibrosis 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.
The Cystic Fibrosis Center at Lurie Children's 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.
Clinical research is essential to get new drugs through the development and approval process. 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.
Participate in a Study
Individuals with cystic fibrosis are needed to participate in clinical trials 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.
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. 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.
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, Sharon Ronald, at 312.227.6858. Learn more about our clinical trials associated with our Division of Pulmonary Medicine.
Each clinical trial has strict guidelines outlining who can participate (called inclusion/exclusion criteria), usually based on such factors as age, gender, type and stage of a disease, previous medical and treatment history, and other conditions. These guidelines identify appropriate participants in order to adequately evaluate safety and efficacy. They also help ensure that researchers will be able to answer the questions they are studying.
Making the Decision to Participate
It is an important and personal decision whether or not to participate in a clinical trial. It may be helpful to talk to your physician, family members or friends before deciding to participate in a research study. The research staff should explain the trial in detail and go over the informed consent with you. Make sure they answer all of your questions and that you are comfortable with your decision whether or not to participate. They should answer the following questions:
- Why is this study being done?
- What is the purpose?
- Who is participating in this study?
- What are the inclusion and exclusion criteria?
- What phase of testing is being done?
- What testing has previously been done?
- What is involved in participating in the study?
- How long is the study?
- How many visits or hospitalizations are involved?
- What type of tests and treatments are involved?
- What are the possible risks or side effects?
- How do these compare to the potential benefits of participating in the study?
- Who will pay for treatment?
- Is there reimbursement for expenses occurred getting to and from study visits?
- Who will see the results of my tests?
- Will they be given to me/my doctor?
- Will the results of the trial be shared with me?
- What other options do I have?
- If I choose to participate, may I withdraw at any time?
Those who choose to participate in a clinical research study may find that they play a more active role in their own healthcare; help others by contributing to medical research; obtain expert medical care at leading health care facilities during the trial; and might even gain access to new research treatments before they are widely available.
There may be some risks in participating and these must be considered as well. The treatment may not be effective; it is possible to be a control subject and receive placebo; there may be unpleasant or even serious side effects to treatment; or the protocol may require more time and attention than is practical (i.e., number, length and location of study visits or hospital stays; dosing requirements or treatments involved).