Cystic Fibrosis Center

The Cystic Fibrosis (CF) Center at the Children’s Hospital of Michigan is a leading center for pediatric cystic fibrosis in Michigan. The Center is the Cystic Fibrosis Foundation accredited care center for patients in the Detroit Tri-County Area. The center offers a multidisciplinary team approach to the care and treatment of infants, children and adolescents with cystic fibrosis. The mission is to provide a comprehensive range of services of the highest quality to patients and families while advancing knowledge through education and research as well as improve the quality of life for those with the disease.

The team includes pediatric pulmonologists on staff, mid-level providers, a CF nurse, respiratory therapists, a dietitian and social worker to help manage the needs of cystic fibrosis patients and their families.

For further information or to schedule an appointment call (313) 745-KIDS or toll-free at (888) 362-2500.

Cystic Fibrosis Services

Initial Diagnosis of Cystic Fibrosis

Getting the first news regarding your child’s positive newborn screen for Cystic Fibrosis (CF) or a new diagnosis of CF, can be a very difficult time indeed. Compassionate team members will walk you through all the initial tests and setting up of clinic appointments to help you fully understand the implications of this diagnosis on your child’s and your own life as well.

Newborn Screening for Cystic Fibrosis in Michigan

Screening for Cystic Fibrosis in all newborn babies born in the state of Michigan has been done on a mandatory basis since October 2007. All babies born in the state of Michigan have an initial screening blood sample sent from the newborn nursery prior to discharge (babies born prematurely may have a newborn screen sent much later). The sample sent, measures the level of Immunoreactive Trypsinogen (IRT) in the newborn’s blood and a result that’s higher than normal will require additional testing to look for the most common mutations causing Cystic Fibrosis. In addition, a notification is sent to the baby’s primary care doctor/pediatrician for the need for further testing to confirm the diagnosis of CF.

The next step in the process of confirming the diagnosis of CF involves checking the salt content of baby’s sweat, also called the Sweat Test.

What is the Sweat Test?

The Sweat Test is a non-invasive test that measures the salt content of sweat and is a confirmatory test for the diagnosis of CF. Patients with CF have a defect in the ability to transfer Chloride from cells and have an abnormally high salt content in their sweat. This test collects sweat by a simple technique to provide a measure of the salt content of sweat to help confirm the diagnosis of CF. Once the result is obtained, the CF care team doctor will discuss the result with you and you will also get the opportunity to go for Genetic Counseling.

Family Advisory Board

The Children's Hospital of Michigan Cystic Fibrosis Family Advisory Board (FAB) provides feedback to and partners with members of the healthcare team to improve the patients’ and families’ experiences and care at the Children’s Hospital of Michigan. The FAB is committed to the betterment and excellence of the entire Cystic Fibrosis (CF) Center at the Children’s Hospital of Michigan.

Cystic Fibrosis Research

Cystic Fibrosis (CF) Clinical Research is the study of people, with CF, who are participating in research. The goal of this research is to improve care and treatment for people with CF. There are approximately 30 potential drugs and therapies in development for cystic fibrosis. These new drugs and therapies can only be made available to people who need them, after they are tested by individuals with CF in a series (phases) of research clinical studies.

Children’s Hospital of Michigan has an active cystic fibrosis clinical research program and has been doing CF research for over 25 years. Research is ongoing, with multiple studies in different phases of development all the time. Each of these studies needs new volunteers (study participants). Research studies have different requirements to participate. All of the research studies are different in how much time and effort is required of each participant. People with CF can play a large role in the development of new drugs and therapies by participating in clinical research.

It is important to talk to your cystic fibrosis doctor or nurse about studies you might be eligible for and interested in participating in. Your CF doctor or nurse may refer you to the CF research coordinator for more information.
Improving Outcomes for Cystic Fibrosis

I have told people that my goal is to keep pushing the life expectancy back, so one day CF stands not for cystic fibrosis, but for 'cure found'.