Filed Under: health data, participatory research, patient networks, peer-to-peer health care, research issues Tagged With: 23andme, Ancestry, Body Politic, COVID19, cystic fibrosis, Health Data, Open Humans Foundation, patient registries, patientslikeme, Webmd ...
The Pulmonary Therapies Committee of Cystic Fibrosis Foundation recommends long-term use of hypertonic saline for patients with cystic fibrosis aged 6 years or older to improve lung function and to reduce the number of exacerbations.[64] When meconium ileus is diagnosed prenatally, the authors recomme...
Jody and I have been asked to participate in the Lancaster area Cystic Fibrosis Foundation – Great Strides Walk for CF. Actually, Jody has been chosen as the Honorary Chairman of the walk and we will be saying a few brief words at the event. In addition, our team will be leading the ...
The discovery of the Cystic fibrosis (CF) gene in 1989 has paved the way for incredible progress in treating the disease such that the mean survival age of individuals living with CF is now ~58 years in Canada. Recent developments in gene targeting tools and new cell and animal models ha...
摘要原文 Cystic fibrosis (CF) is the most common life-shortening autosomal recessive disorder in the Caucasian population and occurs in many other ethnicities worldwide. The daily treatment burden is substantial for CF patients even when they are well, with numerous pharmacologic and physical therapies...
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 defective protein, cystic fibrosis transmembrane conductance regulator
). Treatment for CF consists of an arduous daily regime to reduce the rate of lung function decline over time (Cystic Fibrosis Foundation, n.d). The primary cause of death among those living with CF is respiratory failure. In this article, we explore how young people living with CF in ...
Progressive, chronic bacterial infection of the airways is a leading cause of death in cystic fibrosis (CF). Culture-independent methods based on sequencing of the bacterial 16S rRNA gene describe a distinct microbial community that decreases in richness and diversity with disease progression. Understan...
Patient-derived ECO can model cystic fibrosis biliary disease. ECO cultures were initiated from CF patient extrahepatic bile duct tissue. ECO from healthy donors were used as positive controls. Western blot analysis showed clear expression of wild type mature CFTR protein (170 kDa) in healthy contro...
The diagnosis of cystic fibrosis: a consensus statement. Cystic Fibrosis Foundation Consensus Panel. J Pediatr 1998;132:589 –595. 2. Hamosh A, FitzSimmons SC, Macek M Jr, Knowles MR, Rosenstein BJ, Cutting GR. Comparison of the clinical manifestations of cystic fibrosis in black and white ...