All Resources

This page provides filters and search facilities across all types of CF resources contained within the ECFS website.

Additionally, you can visit the specific resource type pages as follows:

More information on CF publications can be found here: Publications

May 2024

Title: Standards for the care of people with cystic fibrosis (CF); Planning for a longer life
Authors
Andrea Gramegna, Charlotte Addy, Lorna Allen, Egil Bakkeheim, Catherine Brown, Thomas Daniels, Gwyneth Davies, Jane C Davies, Ken De Marie, Damian Downey, Imogen Felton, Sylvia Hafkemeyer, Samia Hamouda, Victoria Kendall, Ulrika Lindberg, Milan Macek,, Sarah Mayell, Oren Pearlsman, Michael S Schechter, Lidia Salvatori, Dorota Sands, Carsten Schwarz, Michal Shteinberg, Julia Taylor, Jennifer L Taylor-Cousar, David Taylor-Robinson, Bethan Watkins, Marieke Verkleij, Amanda Bevan, Carlo Castellani,, Pavel Drevinek, Silvia Gartner, Elise Lammertyn, Eddie Edwina C Landau, Peter G Middleton, Barry J Plant, Alan R Smyth, Silke van Koningsbruggen-Rietschel, Pierre-Régis Burgel, Kevin W Southern
References
J Cyst Fibros. 2024 May;23(3):375-387. doi: 10.1016/j.jcf.2024.05.007.
Keywords
Family, Longer life, standards of care
PDF icon CF Research News Article
Free Access Article
Title: Improved growth in young children with Cystic Fibrosis
Authors
Karlen Bader-Larsen, Daniel Faurholt-Jepsen, Thomas Bryrup,Esben Herborg Henriksen, Hanne Vebert Olesen, Tacjana Pressler, Marianne Skov, Mette Frahm Olsen
References
J Cyst Fibros. 2024 May 23:S1569-1993(24)00072-9. doi: 10.1016/j.jcf.2024.05.009.
Keywords
Body-mass-index, Height, Length, Malnourishment, malnutrition, Newborn screening, Overweight, Stunting, Underweight, Weight, Z-score
PDF icon CF Research News Article
Scientific Abstract

May 2024

Title: Modulatory therapy discontinuation of children with cystic fibrosis
Authors
Burcu Capraz Yavuz, Ebru Yalcin, Halime Nayir Buyuksahin, Birce Sunman, Ismail Guzelkas, Didem Alboga, Meltem Akgul Erdal, Havva Ipek Demir, Raziye Atan, Nagehan Emiralioglu, Deniz Dogru, Ugur Ozcelik, Nural Kiper
References
J Cyst Fibros. 2024 May 18:S1569-1993(24)00069-9. doi: 10.1016/j.jcf.2024.05.006.
Keywords
CFTR modulator drugs, Pseudomonas aeruginosa
PDF icon CF Research News Article
Scientific Abstract

May 2024

Title: In-depth examination of the CFTR gene finds more disease-causing genetic changes than conventional clinical genetic testing
Authors
Molly B Sheridan, Melis A Aksit, Kymberleigh Pagel, Kurt Hetrick, Hannah Shultz-Lutwyche, Ben Myers, Kati J Buckingham, Rhonda G Pace, Hua Ling, Elizabeth Pugh, Wanda K O’Neal, Michael J Bamshad, Ronald L. Gibson, Michael R Knowles, Scott M Blackman, , Garry R Cutting, Karen S Raraigh
References
J Cyst Fibros. 2024 May 10:S1569-1993(24)00062-6. doi: 10.1016/j.jcf.2024.04.018.
Keywords
CFTR, genetic testing, Genome sequencing, Whole-gene sequencing
PDF icon CF Research News Article
Scientific Abstract

May 2024

Title: Accurate identification of people living with cystic fibrosis (CF) in the Danish National Patient Registry
Authors
Hans Kristian Råket, Joanna Nan Wang, Janne Petersen, Tacjana Pressler, Hanne Vebert Olesen, Søren Jensen-Fangel, Thomas Bryrup, Espen Jimenez-Solem, Camilla Bjørn Jensen
References
J Cyst Fibros. 2024 May 9:S1569-1993(24)00066-3. doi: 10.1016/j.jcf.2024.05.003.
Keywords
Databases, Factual, registries, Validation studies
PDF icon CF Research News Article
Scientific Abstract

May 2024

Title: Oversight of Rare Disease Studies: Experience of the CF Foundation DSMB
Authors
Lynne M. Quittell, Richard H. Simon, Wayne Morgan
References
J Cyst Fibros. 2024 May 7:S1569-1993(24)00065-1. doi: 10.1016/j.jcf.2024.05.001.
Keywords
clinical trials, DSMB, Data safety, Data safety monitoring board, Rare disease
PDF icon CF Research News Article
Scientific Abstract

May 2024

Title: The structure of the blood immune system in people with cystic fibrosis and how this affects their lung capacity and the microorganisms colonizing their airways.
Authors
Elio Rossi, Mads Lausen, Nina Friesgaard Øbro, Antonella Colque, Bibi Uhre Nielsen, Rikke Møller, Camilla de Gier, Annemette Hald, Marianne Skov, Tacjana Pressler, Søren Molin, Sisse Rye Ostrowski, Hanne Vibeke Marquart, Helle Krogh Johansen
References
J Cyst Fibros. 2024 May 2:S1569-1993(24)00059-6. doi: 10.1016/j.jcf.2024.04.015.
Keywords
Adaptive immunity, Immune dysregulation, Infections, Innate immunity, Lung microbiome
PDF icon CF Research News Article
Scientific Abstract

May 2024

Title: Exercise capacity after one year of Kaftrio® treatment in people with Cystic Fibrosis
Authors
Lue Katrine Drasbæk Philipsen, Hanne Vebert Olesen, Janne Hastrup Jensen, Mette Frahm Olsen, Daniel Faurholt-Jepsen, Frederik Buchvald, Kim Gjerum Nielsen, Marianne Skov, Tacjana Pressler
References
J Cyst Fibros. 2024 May 1:S1569-1993(24)00055-9. doi: 10.1016/j.jcf.2024.04.010.
PDF icon CF Research News Article
Scientific Abstract