Standards for the care of people with cystic fibrosis (CF); Planning for a longer life.

Autor: Gramegna A; Department of Pathophysiology and Transplantation, Università degli Studi di Milano, Respiratory Unit; Respiratory Unit and Adult Cystic Fibrosis Center, Fondazione IRCCS Cà Granda Ospedale Maggiore Policlinico, Milano, Italy., Addy C; All Wales Adult Cystic Fibrosis Centre, University Hospital Llandough, Cardiff and Vale University Health Board, Cardiff, UK., Allen L; Cystic Fibrosis Trust (UK), 2nd Floor, One Aldgate, London, UK., Bakkeheim E; Norwegian Resource Centre for Cystic Fibrosis, Oslo University Hospital, Oslo, Norway., Brown C; West Midlands Adult CF Centre, Birmingham, UK., Daniels T; NIHR Biomedical Research Centre, School of Clinical and Experimental Sciences, Faculty of Medicine, University of Southampton, Wessex Adult Cystic Fibrosis Service, University Hospital Southampton NHSFT, Southampton, UK., Davies G; Population, Policy and Practice Research and Teaching Department, UCL Great Ormond Street Institute of Child Health, Great Ormond Street Hospital for Children, London, UK., Davies JC; National Heart & Lung Institute, Imperial College London, Imperial Biomedical Research Centre, Royal Brompton Hospital, London, UK., De Marie K; Belgian CF Association, Brussels, Belgium., Downey D; Wellcome-Wolfson Institute for Experimental Medicine, Queen's University Belfast, Belfast, Northern Ireland., Felton I; Adult Cystic Fibrosis Centre, Royal Brompton Hospital, Guys and St Thomas' Hospital NHS Foundation Trust, London UK, National Heart & Lung Institute, Imperial College London, Imperial Biomedical Research Centre., Hafkemeyer S; Mukoviszidose Institut GmbH, subsidiary of the German Cystic Fibrosis association Mukoviszidose e. V., Bonn, Germany., Hamouda S; Bechir Hamza Children's Hospital of Tunis, Faculty of Medicine of Tunis, University Al Manar, Tunis, Tunisia., Kendall V; Manchester Adult Cystic Fibrosis Centre, Manchester University NHS Foundation Trust, Manchester, UK., Lindberg U; Skane University Hospital, Department of clinical sciences, Lund, Respiratory medicine and Allergology, Lund, Sweden., Macek M; Department of Biology and Medical Genetics, 2nd Faculty of Medicine Charles University and Motol University Hospital, Prague, Czech Republic., Mayell S; Alder Hey Children's NHS Foundation Trust, Liverpool, UK., Pearlsman O; Israeli Cystic Fibrosis Association, Israel., Schechter MS; Division of Pulmonary and Sleep Medicine, Virginia Commonwealth University, Children's Hospital of Richmond at VCU, USA., Salvatori L; Cystic Fibrosis Europe, Brussels, Belgium., Sands D; Cystic Fibrosis Department, Institute of Mother and Child, Warsaw, Poland., Schwarz C; HMU-Health and Medical University, Division Cystic Fibrosis, CF Center, Clinic Westbrandenburg, Potsdam, Germany., Shteinberg M; Pulmonologuy institute and CF center, Carmel medical center and the Technion- Israel Institute of Technology, Haifa, Israel., Taylor J; Manchester Adult Cystic Fibrosis Centre, Manchester University NHS Foundation Trust, Manchester, UK., Taylor-Cousar JL; Divisions of Pulmonary, Critical Care and Sleep Medicine and Pediatric Pulmonary Medicine, National Jewish Health, Denver, CO, USA, Division of Pulmonary Sciences and Critical Care Medicine, Anschutz Medical Campus, University of Colorado, Aurora, CO, USA., Taylor-Robinson D; Department of Public Health, Policy and Systems, Waterhouse Building Block F, University of Liverpool, Liverpool, L69 3GB, UK., Watkins B; All Wales Adult Cystic Fibrosis Centre, University Hospital Llandough, Cardiff and Vale University Health Board, Cardiff, UK., Verkleij M; Amsterdam UMC location University of Amsterdam, Emma Children's Hospital, Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam, the Netherlands., Bevan A; University Hospital Southampton NHS Foundation Trust, Southampton, UK., Castellani C; IRCCS Istituto Giannina Gaslini, Via Gerolamo Gaslini 5, 16147 Genova, Italy., Drevinek P; Department of Medical Microbiology, Second Faculty of Medicine, Motol University Hospital, Charles University, Prague, Czech Republic., Gartner S; Cystic Fibrosis Unit and Pediatric Pulmonology, Hospital Universitari Vall d'Hebron, Barcelona, Spain., Lammertyn E; Cystic Fibrosis Europe, the Belgian CF Association, Brussels, Belgium., Landau EEC; The Graub CF Center, Pulmonary Institute, Schneider Children's Medical Center, Petah Tikva, Israel., Middleton PG; Westmead Clinical School, University of Sydney and CITRICA, Dept Respiratory & Sleep Medicine, Westmead Hospital, Westmead, Australia., Plant BJ; Cork Centre for Cystic Fibrosis (3CF), Cork University Hospital, University College Cork, Cork, Ireland., Smyth AR; School of Medicine, Dentistry and Biomedical Sciences, Queens University Belfast, Belfast and NIHR Nottingham Biomedical Research Centre, Nottingham, UK., van Koningsbruggen-Rietschel S; CF Center Cologne, Children´s Hospital, Faculty of Medicine, University Hospital Cologne, Cologne, Germany., Burgel PR; Respiratory Medicine and Cystic Fibrosis National Reference Center, Cochin Hospital, Assistance Publique Hôpitaux de Paris (AP-HP) and Université Paris-Cité, Institut Cochin, Inserm U1016, Paris, France., Southern KW; Department of Women's and Children's Health, University of Liverpool, Liverpool, UK. Electronic address: kwsouth@liv.ac.uk.

Publikováno v: Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society [J Cyst Fibros] 2024 May; Vol. 23 (3), pp. 375-387. Date of Electronic Publication: 2024 May 24.

565 Breastfeeding in cystic fibrosis: a review of nutritional and metabolic impacts

Autor: Downes, A., Robinson, R., Flynn, F., Banya, W., Madge, S., Scott, R., Felton, I.

Publikováno v: In Journal of Cystic Fibrosis October 2023 22 Supplement 3:S298-S298

P177 Cystic fibrosis (CF)-related complications and outcomes of women during pregnancy and post-partum in elexacaftor/tezacaftor/ivacaftor (ETI)-era

Autor: Downes, A., Flynn, F., Robinson, R., Banya, W., Singh, N., Collins, S., Bowman, E., Belkarty, B., Jones, A., Simmonds, N., Ukor, E., Madge, S., Scott, R., Felton, I.

Publikováno v: In Journal of Cystic Fibrosis June 2023 22 Supplement 2:S118-S119

P157 Severe cystic fibrosis in the CFTR modulator era still exists! The implementation of a novel ‘high risk’ multidisciplinary team approach

Autor: Tobin, T., O’Driscoll, M., Dunk, R., Cathcart, F., Belkarty, B., Weldon, P., Ukor, E.-F., Felton, I., Jones, A.L., Madge, S., Simmonds, N.J.

Publikováno v: In Journal of Cystic Fibrosis June 2023 22 Supplement 2:S113-S113

EPS4.10 Obstetric and neonatal outcomes in women with cystic fibrosis (wwCF) and diabetes in pregnancy

Autor: Downes, A., Flynn, F., Robinson, R., Banya, W., Singh, N., Collins, S., Bowman, E., Belkarty, B., Jones, A., Simmonds, N., Ukor, E., Madge, S., Scott, R., Felton, I.

Publikováno v: In Journal of Cystic Fibrosis June 2023 22 Supplement 2:S48-S49