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Purpose of review: Evolving cystic fibrosis 'standards of care' have influenced recent cystic fibrosis clinical trial designs for new therapies; care additions/improvements will require …

Dec 1, 2021 · Design and Methods of a National Observational Disease Registry. The CFFPR contains 95% of clinic visits and 90% of hospitalizations found in the medical record for these …

In this Series paper, we aim to lay the foundation for clinical trial strategy and community partnership that must deviate from established and familiar precedent to advance the future …

Sep 1, 2020 · CFTR modulators associated with substantial clinical benefit are expected to rapidly improve the baseline condition of people with cystic fibrosis (PWCF) as well as decrease the …

We are currently witnessing transformative change for people with cystic fibrosis with the introduction of small molecule, mutation-specific drugs capable of restoring function of the …

Cystic fibrosis (CF) is a life-shortening genetic disease characterized by chronic pulmonary bacterial infections, local inflammation, and progressive loss of pulmonary function .

Historically controlled trials are one potentially statistically efficient approach that can reduce needed sample sizes, and their applicability can be well demonstrated in cystic fibrosis (CF) …

Rationale: The Cystic Fibrosis Foundation Patient Registry (CFFPR) is an ongoing patient registry study that collects longitudinal demographic, clinical, and treatment information about persons …

The cystic fibrosis (CF) field is the beneficiary of five species of animal models that lack functional cystic fibrosis transmembrane conductance regulator (CFTR) channel. These models are …

In this month’s issue of AnnalsATS, Knapp and colleagues (pp. 1173–1179) describe, in detail, the development of the Cystic Fibrosis Foundation Patient Registry (CFFPR), highlighting the …

Dec 1, 2021 · Novel therapies have dramatically changed cystic fibrosis (CF) and innovative care delivery systems are needed to meet future patient needs. Telehealth has been shown to be …

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CFTR modulators associated with substantial clinical benefit are expected to rapidly improve the baseline condition of people with cystic fibrosis (PWCF) as well as decrease the rate of lung …

Dec 21, 2021 · We aim to report survey methods, demographics and telehealth use among CF care programs, patients, and families during the pandemic. Methods: CF programs completed …

Dec 27, 2024 · People with cystic fibrosis (PwCF), families, and clinicians, partner to co-produce care, navigate access barriers, address mental health and social factors, follow specific …

Moii is an Airway Clearance Therapy training kit for adolescents with Cystic Fibrosis. It enhances compliance through progressive training, increasing patient's' ability to expel mucus, reducing …

The Epidemiologic Study of Cystic Fibrosis (ESCF) was therefore designed as a multicenter, longitudinal, observational study to prospectively collect detailed clinical, therapeutic, …

Jan 17, 2025 · Study design. Our real-world study analyzes data derived from a subset of Heim Pál National Pediatric Institute’s comprehensive data collection on the general pediatric CF …

1 day ago · Background Lung transplantation is the ultimate treatment option for patients with advanced cystic fibrosis. Chronic colonization of these recipients with multidrug-resistant …

Novel therapies have dramatically changed cystic fibrosis (CF) and innovative care delivery systems are needed to meet future patient needs. Telehealth has been shown to be an …

Feb 7, 2022 · This study uses a pathological cystic fibrosis (CF) mucus model to investigate how mucus impacts the passive diffusion of 45 ad hoc commercial drugs selected to maximize …

6 days ago · Cystic fibrosis (CF) has a complex disease phenotype with a broad spectrum of physical and psychological manifestations [1]. The most prominent clinical manifestations …