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Cystic Fibrosis (CF) research at Cook Children's is part of the Cook Children's Pulmonary department, which includes the Fort Worth Cystic Fibrosis Center, where both pediatric and adult CF patients are treated in an outpatient setting. The ability to provide CF care for adolescents and adults in one location allows for an easier transition from pediatric to adult care for our CF patients.
Cook Children's Pulmonary department has a dedicated research nurse that oversees the entire research process from registering trial participants to obtaining clinical trial approvals.
Recognized for our commitment to excellence, in January 2009, Cook Children’s was honored as a Therapeutics Development Network (TDN) coordinating center by the CF Foundation to participate in clinical trial studies for the CF patient. The TDN is a nationwide network of 82 CF clinical research centers. These centers specialize in conducting clinical trials to evaluate the safety and effectiveness of new CF therapies. The TDN centers work together to promote quality, safety, and efficiency in CF clinical trials by centralizing and standardizing the research process.
As an active research facility, we are at the forefront of treatments from prenatal through adulthood. This lets us work closely with each patient and the families to look at the options and advanced care—from genetics to targeted therapies—that otherwise might not be available to them.
Not only do we build relationships with a global network of leading researchers, we also partner with our patients and parents starting on day one of the diagnosis; and it is only in the context of that relationship that we introduce the subject of research. Parents do not want to expose their children to risks, but most of them come to understand the concept of clinical trials. We explain how our clinical research has advanced the field of medicine and how it contributes to our cure rates here, as well as advances in cystic fibrosis.
The ultimate goal of Children's CF Center is to cure all children, teens and adults with cystic fibrosis, to determine the causes and find ways to prevent it.
Although Cook Children's is not a traditional academic center affiliated with a university, we are academic in how we approach research and practice day in and day out. As a key collaborator with the nation's leading pediatric research organizations, our team offers the best available treatments and contributes to the search for a cure.
When you take part in a research project, you’re not only helping yourself, you are potentially changing the world, at least for people with CF and their families. In fact, much of the advanced care you receive is because someone just like you took an active role in research. Still not sure? Consider this: just 20 years ago, a diagnosis of CF meant you’d be lucky to live into your teens. Today, the outlook is much better, with the average age being 41, and we have people in our CF Center here at Cook Children’s who are in their 20s, 30s, even 70s. These are people who live active lives with careers, families and lots to look forward to. And who knows, the trial you participate in might just be the one that changes CF to “Cure Found.”
Of course, we can tell you in our words, but no one can say it better than a CF patient who has been there, like Carol Shepherd. As a participant, she has helped herself and others live longer and enjoy happy, productive lives. Learn more about Carol and our in the video below.
For more information on the current pulmonary research studies, please contact us at CookChildrensResearch@cookchildrens.org or 682-885-2103.
If you have been told your child might have CF, we know you have lots of questions. We can help. For information on support, research clinical trials, and resources, click here. If you would like to schedule an appointment, refer a patient or speak to our staff, please call our offices at 682-885-6299.
After hours care
After hours and on weekends/holidays, call 682-885-4000 and ask the operator to page the pulmonologist on call.
Did you know you can sign up for text message reminders for your appointments at Cook Children's? It's easy: Log on to your patient portal account. Under my profile, click on Contact Preferences and select text message under appointment reminders and then click Sav
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