CF Foundation-accredited care centers play an important role in research. They collect information on the health status of their patients with CF who agree to participate, and report that data to the CF Foundation Patient Registry. The information is available in aggregate to the CF community each year through the Data Report, the Highlights Report, and the Care Center Finder.
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In the third plenary, Dr. Wayne Morgan talked about the connection between cystic fibrosis care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry.
A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.
Nationwide Effort to Instill Best Practices for Cystic Fibrosis Care is Honored for Excellence
New Patient Data Posted Online Shows Improvements Across Care Center Network
The Partnerships for Sustaining Daily Care (PSDC) team had the opportunity to hear from people with cystic fibrosis, families and care teams at five Family Education Days at care centers across the country. Here's what we heard.
Learn how nurse practitioner and CF care provider Jennifer Hamilton helped lead the implementation and execution of infection prevention and control guidelines at her CF clinic.
Palliative care guidelines provide recommendations to help reduce physical and emotional symptoms and improve quality of life for people with cystic fibrosis throughout their lives.
There is no consensus on the best model of care for individuals with CF to manage the non-pulmonary complications that persist after lung transplant. This position paper outlines two models of post-transplant care to accomplish optimal CF care after transplant.