What is the CF Foundation patient registry?
The CF Foundation Patient Registry collects information on the health status of people with cystic fibrosis who receive care in CF Foundation-accredited care centers and agree to participate in the Registry.
How is the information available to the CF community?
The information is available in aggregate to the CF community each year through the Data Report, the Highlights Report, and the Care Center Finder. 3 min read ARTICLE Patient Registry Data Requests
How does the CF Foundation protect my personal health information?
The CF Foundation is entrusted with this personal health information and is responsible for keeping that information private and secure. For this reason, we have a standard set of criteria that must be met by all individuals requesting to use Registry data.
Why is the UK cf registry important?
The UK CF Registry, which now contains complete data for more than 95% of the UK CF population, is a vital tool for improving clinical care, stimulating research and monitoring drug safety.
How to treat CF?
Most people with CF must take pancreatic enzyme supplements with every meal to absorb enough calories and nutrients to grow and stay healthy. They also must eat a high-calorie, high-fat diet. People with CF also perform daily airway clearance therapy to help clear mucus from the lungs. Other types of treatments include antibiotics to fight lung infections and drugs to thin the mucus and improve lung function.
Why does mucus clog the lungs?
Because of a defective gene and the protein it produces, the body manufactures unusually thick, sticky mucus. This mucus clogs the lungs and can lead to life-threatening lung infections. It also can obstruct the pancreas and block the release of sufficient pancreatic enzymes to help the body break down and absorb food.
What is the best treatment for CF?
They also must eat a high-calorie, high-fat diet. People with CF also perform daily airway clearance therapy to help clear mucus from the lungs. Other types of treatments include antibiotics to fight lung infections and drugs to thin the mucus and improve lung function. Learn About Newborn Screening for CF.
How many people have CF?
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive systems of about 30,000 children and adults in the United States and 70,000 people worldwide. CF is caused by a recessive gene, which means that a child must inherit two copies of the defective CF gene—one from each parent—to have the disease.
What is the color of a CF clinic?
This scheduling is called “cohorting” and each patient will be assigned to an appropriate clinic by a color designation: white, orange, blue, red, or green. When calling to schedule an appointment, knowledge of your cohort will assure correct scheduling for you/your child. Return appointments are made at each clinic visit. If you need to change your appointment, you should call (352) 265-8250 and tell the scheduler which CF clinic you need.
Why is infection control important in hospitals?
Infection control in the hospital is extremely important to protect everyone.
Is the Cystic Fibrosis Center accredited?
Cystic Fibrosis Center. The Cystic Fibrosis (CF) Center at the University of Florida is accredited by the Cystic Fibrosis Foundation. The Foundation accredits and provides partial funding for interdisciplinary pediatric and adult cystic fibrosis care centers nationwide.
What is CFFC in medical terms?
CFFC: A Long-Term Prospective Observational Safety Study of the Incidence of and Risk Factors for Fibrosing Colonopathy in US Patients with Cystic Fibrosis Treated with Pancreatic Enzyme Replacement Therapy: A Harmonized Protocol across Sponsors
What is a SIMPLIFY protocol?
A master protocol to test the impact of discontinuing chronic therapies in people with cystic fibrosis on highly effective CFTR modulator therapy (SIMPLIFY)
What is CX 280 202?
CX-280-202: A Phase 1B randomized, double-blind, placebo-controlled trial to evaluate the safety of CB-280 in patients with cystic fibrosis
Why is research important for CF?
Research is an important part of Cystic Fibrosis (CF) care because it is the only way we can develop better treatments and, hopefully, a cure for CF in the near future. We have several clinical research opportunities. These trials involve volunteers who help scientists answer specific questions about a new treatment or a new way of using an old treatment.
What is the prospective study of CFTR?
A prospective study to evaluate the biological and clinical effects of significantly corrected CFTR function (the PROMISE Study)
How old do you have to be to have a NTM positive sputum culture?
Ages 6 years and older with a recent NTM positive sputum culture
How long does CTX 4430 last?
This study evaluated the safety and efficacy of CTX-4430 administered once daily for 48 weeks for treatment of CF. CTX-4430 is a novel synthetic, small-molecule, LTA4H inhibitor being developed to address the underlying pulmonary inflammation in CF.
What is the Patriots mail number?from mycf.cf.edu
If neither works, please give us a call at 352-854-2322 x1378. We are here on weekdays from 7 a.m. to 6 p.m.
When will 1098 T be available for students?from mycf.cf.edu
Click the calendar tab for the complete Calendar including Drop and Add Dates. 1098-T forms have been made available to eligible students on January 26, 2021. Log in to your Student Portal, select the Finances tab, then select the menu option for My 1098 to print your form.
What is CF college catalog?from mycf.cf.edu
The CF College Catalog is your source for information on courses, programs, degrees, student resources and more.
Does College of Central Florida have CF Patriots email?from mycf.cf.edu
College of Central Florida provides students a required CF Patriots Mail account through Microsoft. Students have the free benefit of Microsoft Office 365 ProPlus, which includes Word, PowerPoint, Excel, Access and OneDrive in the Microsoft cloud. The tools are available for up to five devices per account, which means you can access from a personal computer, tablet, and/or cell phone on any browser. You can use your professional email address for job-seeking as well. Find out more, get help or log on now to get started!
Can you meet with prospective students on Zoom?from mycf.cf.edu
We continue to meet with prospective and current students via Zoom. Join Admissions, Enrollment Services, Financial Aid, or Veterans Services in our virtual lobby for a one-on-one Zoom meeting with one of our staff members. You can ask questions about the application process, admissions status, financial aid options, veterans' benefits and more.