The future of cystic fibrosis care: a global perspective
Executive summary The past six decades have seen remarkable improvements in health
outcomes for people with cystic fibrosis, which was once a fatal disease of infants and young …
outcomes for people with cystic fibrosis, which was once a fatal disease of infants and young …
The Changing Epidemiology of Cystic Fibrosis: Incidence, Survival and Impact of the CFTR Gene Discovery
V Scotet, C L'hostis, C Férec - Genes, 2020 - mdpi.com
Significant advances in the management of cystic fibrosis (CF) in recent decades have
dramatically changed the epidemiology and prognosis of this serious disease, which is no …
dramatically changed the epidemiology and prognosis of this serious disease, which is no …
Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review
EG Miller, AL Woodward, G Flinchum, JL Young… - Genetics in …, 2021 - nature.com
Purpose Social media may be particularly valuable in research in rare genetic diseases
because of the low numbers of patients and the rare disease community's robust online …
because of the low numbers of patients and the rare disease community's robust online …
[HTML][HTML] Target Diseases for Neonatal Screening in Germany: Challenges for Treatment and Long-Term Care
U Spiekerkoetter, H Krude - Deutsches Ärzteblatt International, 2022 - ncbi.nlm.nih.gov
Background Neonatal screening in Germany currently comprises 19 congenital diseases, 13
of which are metabolic diseases. Approximately one in 1300 newborns suffers from one of …
of which are metabolic diseases. Approximately one in 1300 newborns suffers from one of …
[HTML][HTML] Recommended shielding against COVID-19 impacts physical activity levels in adults with cystic fibrosis
Background Severe acute respiratory syndrome–coronavirus-2 (SARS-CoV-2) has caused a
pandemic threatening the life of people with chronic respiratory diseases including cystic …
pandemic threatening the life of people with chronic respiratory diseases including cystic …
Membrane lipid renovation in Pseudomonas aeruginosa ‐ implications for phage therapy?
R Lyon, RA Jones, H Shropshire… - Environmental …, 2022 - Wiley Online Library
Pseudomonas aeruginosa is an important Gram‐negative pathogen with intrinsic resistance
to many clinically used antibiotics. It is particularly troublesome in nosocomial infections …
to many clinically used antibiotics. It is particularly troublesome in nosocomial infections …
Manual therapies in cystic fibrosis care: a scoping review
N Sposato Sinderholm, K Bjerså - Chiropractic & Manual Therapies, 2023 - Springer
Objectives To review the use of manual therapies (MT) for pain, respiratory muscle strength
and pulmonary function in cystic fibrosis (CF) care. Methods A search with a systematic …
and pulmonary function in cystic fibrosis (CF) care. Methods A search with a systematic …
[HTML][HTML] The lancet respiratory medicine commission on the future of care of cystic fibrosis
The past six decades have seen remarkable improvements in health outcomes for people
with cystic fibrosis (CF), which was once a fatal disease of infants and young children …
with cystic fibrosis (CF), which was once a fatal disease of infants and young children …
Critical disease burdens of Australian adults with cystic fibrosis: Results from an online survey
Background The objective of this study was to conduct a web‐based questionnaire to
investigate self‐reported phenotypes and disease burdens of individuals living in Australia …
investigate self‐reported phenotypes and disease burdens of individuals living in Australia …
Managing Prognosis in Precision Medicine: Utility, Imagination, and Communication
Research on how physicians predict and communicate prognosis focuses primarily on end-
of-life care. Unsurprisingly, as genomic technology gains traction as a prognostic tool, the …
of-life care. Unsurprisingly, as genomic technology gains traction as a prognostic tool, the …