158 Validation of the Q-Life app: An individualized patient-reported outcome measure to assess quality of life

Autor: Muilwijk, D., van Paridon, T., Gulmans, V., Heijerman, H., van der Ent, C.

Publikováno v: In Journal of Cystic Fibrosis October 2022 21 Supplement 2:S93-S93

Factors associated with clinical progression to severe COVID-19 in people with cystic fibrosis: A global observational study.

Autor: Carr SB; Royal Brompton Hospital, part of GSST NHS Foundation Trust, London, UK; NHLI, Imperial College, London, UK. Electronic address: s.carr@rbht.nhs.uk., McClenaghan E; Cystic Fibrosis Trust, London, UK; London School of Hygiene and Tropical Medicine, London, UK., Elbert A; Cystic Fibrosis Foundation, USA., Faro A; Cystic Fibrosis Foundation, USA., Cosgriff R; Cystic Fibrosis Trust, London, UK., Abdrakhmanov O; The Second Children's Hospital, Kazakhstan., Brownlee K; Cystic Fibrosis Trust, London, UK., Burgel PR; Université de Paris, Inserm U1016, Institut Cochin and Cochin Hospital, Assistance Publique Hôpitaux de Paris (APHP), France., Byrnes CA; Starship Children's Hospital and University of Auckland, Auckland, New Zealand., Cheng SY; Cystic Fibrosis, Canada., Colombo C; Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, University of Milan, Italy., Corvol H; Sorbonne Université, Inserm, Centre de Recherche Saint-Antoine, Assistance Publique Hôpitaux de Paris (APHP), Hôpital Trousseau, Service de Pneumologie Pédiatrique, Paris, France., Daneau G; Sciensano, Belgium., Goss CH; University of Washington, Seattle, USA., Gulmans V; Dutch CF Foundation NCFS, Baarn, Netherlands., Gutierrez H; University of Alabama at Birmingham, Alabama, USA., Harutyunyan S; Yerevan University CF Centre, Muratsan Hospital, Yerevan, Armenia., Helmick M; Cystic Fibrosis Foundation, USA., Jung A; University Children's Hospital, Zurich, Switzerland., Kashirskaya N; Research Centre for Medical Genetics, Russia., McKone E; St Vincent's University Hospital, Dublin, Ireland., Melo J; Instituto Nacional Del Torax, Chile., Middleton PG; Westmead Hospital, Sydney, Australia., Mondejar-Lopez P; Hospital Clínico Universitario Virgen de la Arrixaca, Murcia, Spain., de Monestrol I; Department of Pediatrics, CLINTEC, Karolinska Institutet; Karolinska University Hospital Huddinge, Sweden., Nährlich L; Department of Pediatrics, Justus-Liebig-University Giessen, Giessen, Germany., Padoan R; Cystic Fibrosis Support Center, Department of Paediatric, University of Brescia, Italy., Parker M; Cystic Fibrosis, Canada., Pastor-Vivero MD; Hospital Universitario Cruces, IIC Biocruces-Bizkaia, Bizkaia., Rizvi S; Cystic Fibrosis Foundation, USA., Ruseckaite R; Monash University, Melbourne, Australia., Salvatore M; Istituto Superiore di Sanita, National Center Rare Diseases, Undiagnosed Rare Diseases Interdepartmental Unit, Rome, Italy., da Silva-Filho LVRF; Instituto da Criança HCFMUSP, São Paulo, Brazil., Versmessen N; Expert by Experience, Ghent University, Belgium., Zampoli M; University of Cape Town and Red Cross War Memorial Children's Hospital, South Africa., Marshall BC; Cystic Fibrosis Foundation, USA., Stephenson AL; Cystic Fibrosis, Canada; Toronto Adult Cystic Fibrosis Centre, St. Michael's Hospital, Toronto, Canada.

Publikováno v: Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society [J Cyst Fibros] 2022 Jul; Vol. 21 (4), pp. e221-e231. Date of Electronic Publication: 2022 Jun 13.

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Factors for severe outcomes following SARS-CoV-2 infection in people with cystic fibrosis in Europe.

Autor: Jung A; Paediatric Pulmonology, University Children's Hospital Zurich, Zurich, Switzerland.; Co-first authors., Orenti A; Dept of Clinical Sciences and Community Health, Laboratory of Medical Statistics, Epidemiology and Biometry G.A. Maccacaro, University of Milan, Milan, Italy.; Co-first authors., Dunlevy F; European Cystic Fibrosis Society, Karup, Denmark.; Co-first authors., Aleksejeva E; Dept of Pneumology, Children's Clinical University Hospital, Rīga Stradinš University, Riga, Latvia., Bakkeheim E; Dept of Paediatrics, Norwegian Cystic Fibrosis Registry, Oslo University Hospital, Oslo, Norway., Bobrovnichy V; Belarusian Republic Children's Center of Pulmonology and Cystic Fibrosis, Pulmonary Department, 3rd City Children's Clinical Hospital, Minsk, Belarus., Carr SB; Dept of Respiratory Paediatrics, Royal Brompton Hospital, London, UK.; NHLI, Imperial College, London, UK., Colombo C; Dept of Pathophysiology and Transplantation, Cystic Fibrosis Reference Center of Lombardia Region, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, University of Milan, Milan, Italy., Corvol H; Pediatric Pulmonology Dept and Cystic Fibrosis Center, Sorbonne Université, Centre de Recherche Saint-Antoine, Inserm UMR_S938, Assistance Publique-Hôpitaux de Paris, Hôpital Trousseau, Paris, France., Cosgriff R; Cystic Fibrosis Trust, London, UK., Daneau G; Sciensano, Epidemiology and Public Health, Health Services Research, Brussels, Belgium., Dogru D; Cystic Fibrosis Registry of Turkey, Ankara, Turkey., Drevinek P; Dept of Medical Microbiology, Second Faculty of Medicine, Charles University and Motol University Hospital, Prague, Czech Republic., Vukic AD; University Hospital Centre Zagreb, Cystic Fibrosis Centre - Paediatrics and Adults, Zagreb, Croatia., Fajac I; Université Paris Descartes, Sorbonne Paris Cité, Paris, France.; AP-HP, Hôpital Cochin, Service de Physiologie et Explorations Fonctionnelles, Paris, France., Fox A; European Cystic Fibrosis Society, Karup, Denmark., Fustik S; Centre for Cystic Fibrosis, University Children's Hospital, Skopje, North Macedonia., Gulmans V; Dutch Cystic Fibrosis Foundation (NCFS), Baarn, The Netherlands., Harutyunyan S; Yerevan University CF Centre, Muratsan Hospital, Yerevan, Armenia., Hatziagorou E; Cystic Fibrosis Unit, Hippokration General Hospital, Aristotle University of Thessaloniki, Thessaloniki, Greece., Kasmi I; Dept of Paediatrics, 'Mother Thereza' Hospital Center, Tirana, Albania., Kayserová H; Cystic Fibrosis Centre, University Hospital of Bratislava, Bratislava, Slovakia., Kondratyeva E; Clinical Research Dept of Cystic Fibrosis 'Research Centre for Medical Genetics', Moscow, Russian Federation., Krivec U; Dept of Paediatric Pulmonology, University Children's Hospital, Ljubljana University Medical Centre, Ljubljana, Slovenia., Makukh H; Institute of Hereditary Pathology, Ukrainian National Academy of Medical Sciences, Lviv, Ukraine., Malakauskas K; Adult Cystic Fibrosis Center, Dept of Pulmonology, Lithuanian University of Health Sciences, Kaunas, Lithuania., McKone EF; St Vincent's University Hospital & University College Dublin School of Medicine, Dublin, Ireland., Mei-Zahav M; Pulmonary Institute, Schneider Children's Medical Center of Israel, Petah Tikva, Israel.; Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel., de Monestrol I; Stockholm CF Centre, Karolinska University Hospital, Karolinska Institutet, Stockholm, Sweden., Olesen HV; Dept of Pediatrics and Adolescent Medicine, Cystic Fibrosis Center, Aarhus University Hospital, Aarhus, Denmark., Padoan R; Dept of Paediatrics, Cystic Fibrosis Regional Support Centre, University of Brescia, Brescia.; Scientific Board of Italian CF Registry, Rome, Italy., Parulava T; I. Tsitsishvili Children's Clinic, CF Centre, Tblisi, Georgia., Pastor-Vivero MD; Pediatric Pneumology and Cystic Fibrosis Unit, Osakidetza, Hospital Universitario Cruces, Bizkaia, Spain., Pereira L; Centre for Cystic Fibrosis, Hospital de Santa Maria, Lisbon, Portugal., Petrova G; Pediatric Clinic, Alexandrovska University Hospital, Medical University, Sofia, Bulgaria., Pfleger A; Dept of Pediatrics and Adolescent Medicine, Division of Pediatric Pulmonology and Allergology, Medical University of Graz, Graz, Austria., Pop L; Victor Babes University of Medicine and Pharmacy Timisoara, National Cystic Fibrosis Centre, Timisoara, Romania., van Rens JG; European Cystic Fibrosis Society, Karup, Denmark., Rodic M; National Centre for Cystic Fibrosis, Mother and Child Health Institute of Serbia 'Dr Vukan Čupić', Belgrade, Serbia., Schlesser M; Dept of Pulmonology, Hôpital Robert Schuman, Luxembourg, Luxembourg., Storms V; Cystic Fibrosis Europe, Brussels, Belgium., Turcu O; Dept of Pediatrics, Ambulatory Cystic Fibrosis and Other Rare Diseases Center, Institute for Maternal and Child Healthcare, State University of Medicine and Pharmacy 'Nicolae Testemitanu', Chisinau, Republic of Moldova., Woz Niacki L; Dziekanow Paediatric Hospital, Cystic Fibrosis Centre, Institute of Mother and Child, Warsaw, Poland., Yiallouros P; Medical School, University of Cyprus, Nicosia, Cyprus., Zolin A; Dept of Clinical Sciences and Community Health, Laboratory of Medical Statistics, Epidemiology and Biometry G.A. Maccacaro, University of Milan, Milan, Italy., Downey DG; Wellcome-Wolfson Institute for Experimental Medicine, Queen's University Belfast, Belfast, UK.; Regional Respiratory Centre, Belfast City Hospital, Belfast, UK.; Co-senior authors., Naehrlich L; Dept of Clinical Sciences and Community Health, Laboratory of Medical Statistics, Epidemiology and Biometry G.A. Maccacaro, University of Milan, Milan, Italy.; Universities of Giessen and Marburg Lung Center, German Center of Lung Research, Justus-Liebig-University Giessen, Giessen, Germany.; Co-senior authors.

Publikováno v: ERJ open research [ERJ Open Res] 2021 Dec 27; Vol. 7 (4). Date of Electronic Publication: 2021 Dec 27 (Print Publication: 2021).

P013 Evaluation of improvements of the cystic fibrosis newborn screening protocol in the Netherlands

Autor: Bouva, M., Heijnen, M.-L., Jakobs, B., van der Ploeg, K., Gille, J., Gulmans, V., Verschoof-Puite, R., deWinter-de Groot, K.

Publikováno v: In Journal of Cystic Fibrosis 2021 20 Supplement 1:S42-S42