The future of cystic fibrosis care: a global perspective

SC Bell, MA Mall, H Gutierrez, M Macek… - The Lancet …, 2020 - thelancet.com
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 …

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 …

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 …

[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 …

[HTML][HTML] Recommended shielding against COVID-19 impacts physical activity levels in adults with cystic fibrosis

T Radtke, SR Haile, H Dressel, C Benden - Journal of Cystic Fibrosis, 2020 - Elsevier
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 …

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 …

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 …

[HTML][HTML] The lancet respiratory medicine commission on the future of care of cystic fibrosis

SC Bell, MA Mall, H Gutierrez, M Macek… - The Lancet …, 2020 - ncbi.nlm.nih.gov
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 …

Critical disease burdens of Australian adults with cystic fibrosis: Results from an online survey

A Ward, R Mauleon, J Arellano, CY Ooi… - Pediatric …, 2023 - Wiley Online Library
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 …

Managing Prognosis in Precision Medicine: Utility, Imagination, and Communication

R Mueller, BM Lee, KP Callahan - Children, 2023 - mdpi.com
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 …