المؤلفون: Southern, Kevin, BATTEZZATI, ALBERTO, Berry, Claire, Bouchara, Jean-Philippe, Gartner Tizzano, Silvia, Burgel, Pierre Regis, Addy, Charlotte

المساهمون: Institut Català de la Salut, Burgel PR Respiratory Medicine and Cystic Fibrosis National Reference Center, Cochin Hospital, Assistance Publique Hôpitaux de Paris (AP-HP), Institut Cochin, Inserm U1016, Université Paris-Cité, Paris, France. Southern KW Department of Women's and Children's Health, Institute in the Park, Alder Hey Children's Hospital, University of Liverpool, Eaton Road, Liverpool, UK. Addy C All Wales Adult Cystic Fibrosis Centre, University Hospital Llandough, Cardiff and Vale University Health Board, Cardiff, UK. Battezzati A Clinical Nutrition Unit, Department of Endocrine and Metabolic Medicine, IRCCS Istituto Auxologico Italiano, and ICANS-DIS, Department of Food Environmental and Nutritional Sciences, University of Milan, Milan, Italy. Berry C Department of Nutrition and Dietetics, Alder Hey Children's NHS Trust, Liverpool, UK. Bouchara JP University of Brest, Fungal Respiratory Infections Research Unit, SFR ICAT, University of Angers, Angers, France. Gartner S Unitat de Pneumologia Pediàtrica i Fibrosi Quística, Vall d’Hebron Hospital Universitari, Barcelona, Spain, Vall d'Hebron Barcelona Hospital Campus

المصدر: Scientia

مصطلحات موضوعية: Pacients - Satisfacció, Fibrosi quística - Tractament, Atenció primària, DISEASES::Respiratory Tract Diseases::Lung Diseases::Cystic Fibrosis, Other subheadings::Other subheadings::/therapy, HEALTH CARE::Environment and Public Health::Public Health::Epidemiologic Measurements::Demography::Health Status::Quality of Life, HEALTH CARE::Health Services Administration::Quality of Health Care::Quality Indicators, Health Care::Standard of Care, ENFERMEDADES::enfermedades respiratorias::enfermedades pulmonares::fibrosis quística, Otros calificadores::Otros calificadores::/terapia, ATENCIÓN DE SALUD::ambiente y salud pública::salud pública::medidas epidemiológicas::demografía::estado de salud::calidad de vida, ATENCIÓN DE SALUD::administración de los servicios de salud::gestión de la atención al paciente::atención integral de salud::atención primaria de la salud

وصف الملف: application/pdf

العلاقة: Journal of Cystic Fibrosis;23(2); https://doi.org/10.1016/j.jcf.2024.01.005Test; Burgel PR, Southern KW, Addy C, Battezzati A, Berry C, Bouchara JP, et al. Standards for the care of people with cystic fibrosis (CF); recognising and addressing CF health issues. J Cyst Fibros. 2024 Mar;23(2):187–202.; https://hdl.handle.net/11351/11535Test

الإتاحة: https://doi.org/10.1016/j.jcf.2024.01.005Test
https://hdl.handle.net/11351/11535Test

المؤلفون: Southern, Kevin W, Addy, Charlotte, Bell, Scott C, Bevan, Amanda, Borawska, Urzula, Brown, Catherine, Burgel, Pierre-Régis, Button, Brenda, Castellani, Carlo, Chansard, Audrey, Chilvers, Mark, Davies, Gwyneth, Davies, Jane C, De Boeck, Kris, Declercq, Dimitri, Doumit, Michael, Drevinek, Pavel, Fajac, Isabelle, Gartner, Silvia, Georgiopoulos, Anna M, Gursli, Sandra, Gramegna, Andrea, Hansen, Carina M E, Hug, Martin J, Lammertyn, Elise, Landau, Edwina (Eddie) C, Langley, Ross, Mayer-Hamblett, Nicole, Middleton, Anna, Middleton, Peter G, Radtke, Thomas

المصدر: Southern, Kevin W; Addy, Charlotte; Bell, Scott C; Bevan, Amanda; Borawska, Urzula; Brown, Catherine; Burgel, Pierre-Régis; Button, Brenda; Castellani, Carlo; Chansard, Audrey; Chilvers, Mark; Davies, Gwyneth; Davies, Jane C; De Boeck, Kris; Declercq, Dimitri; Doumit, Michael; Drevinek, Pavel; Fajac, Isabelle; Gartner, Silvia; Georgiopoulos, Anna M; Gursli, Sandra; Gramegna, Andrea; Hansen, Carina M E; Hug, Martin J; Lammertyn, Elise; Landau, Edwina (Eddie) C; Langley, Ross; Mayer-Hamblett, Nicole; Middleton, Anna; Middleton, Peter G; Radtke, Thomas; et al (2024). Standards for the care of people with cystic fibrosis; establishing and maintaining health. Journal of Cystic Fibrosis, 23(1):12-28.

مصطلحات موضوعية: Epidemiology, Biostatistics and Prevention Institute (EBPI), 610 Medicine & health, Pulmonary and Respiratory Medicine, Pediatrics, Perinatology and Child Health

وصف الملف: application/pdf

العلاقة: https://www.zora.uzh.ch/id/eprint/254171/1/standards_southern_PIIS1569199323017277.pdfTest; info:pmid/38129255; urn:issn:1569-1993

الإتاحة: https://doi.org/10.5167/uzh-25417110.1016/j.jcf.2023.12.002Test
https://www.zora.uzh.ch/id/eprint/254171Test/
https://www.zora.uzh.ch/id/eprint/254171/1/standards_southern_PIIS1569199323017277.pdfTest

المؤلفون: Southern, Kevin W., Hug, Martin Johannes, van Koningsbruggen-Rietschel, Silke

المصدر: Journal of cystic fibrosis. - 23, 1 (2024) , 12-28, ISSN: 1873-5010

وصف الملف: pdf

العلاقة: https://freidok.uni-freiburg.de/data/242854Test

الإتاحة: https://doi.org/10.1016/j.jcf.2023.12.002Test
https://freidok.uni-freiburg.de/data/242854Test
https://nbn-resolving.org/urn:nbn:de:bsz:25-freidok-2428549Test
https://freidok.uni-freiburg.de/dnb/download/242854Test

المؤلفون: Burgel, Pierre-Régis, Southern, Kevin W, Addy, Charlotte, Battezzati, Alberto, Berry, Claire, Bouchara, Jean-Philippe, Brokaar, Edwin, Brown, Whitney, Azevedo, Pilar, Durieu, Isabelle, Ekkelenkamp, Miquel, Finlayson, Felicity, Forton, Julian, Gardecki, Johanna, Hodkova, Pavla, Hong, Gina, Lowdon, Jacqueline, Madge, Su, Martin, Clémence, McKone, Edward, Munck, Anne, Ooi, Chee Y, Perrem, Lucy, Piper, Amanda, Prayle, Andrew, Ratjen, Felix, Rosenfeld, Margaret, Sanders, Don B, Schwarz, Carsten, Taccetti, Giovanni, Wainwright, Claire, West, Natalie E, Wilschanski, Michael, Bevan, Amanda, Castellani, Carlo, Drevinek, Pavel, Gartner, Silvia, Gramegna, Andrea, Lammertyn, Elise, Landau, Eddie (Edwina) C, Plant, Barry J, Smyth, Alan R, van Koningsbruggen-Rietschel, Silke, Middleton, Peter G.

المساهمون: European Cystic Fibrosis Society

المصدر: Journal of Cystic Fibrosis ; ISSN 1569-1993

مصطلحات موضوعية: Pulmonary and Respiratory Medicine, Pediatrics, Perinatology and Child Health

الإتاحة: https://doi.org/10.1016/j.jcf.2024.01.005Test
https://api.elsevier.com/content/article/PII:S1569199324000055?httpAccept=text/xmlTest
https://api.elsevier.com/content/article/PII:S1569199324000055?httpAccept=text/plainTest

المؤلفون: Southern, Kevin W., Castellani, Carlo, Lammertyn, Elise, Smyth, Alan, VanDevanter, Donald, van Koningsbruggen-Rietschel, Silke, Barben, Jürg, Bevan, Amanda, Brokaar, Edwin, Collins, Sarah, Connett, Gary J., Daniels, Thomas W.V., Davies, Jane, Declercq, Dimitri, Gartner, Silvia, Gramegna, Andrea, Hamilton, Naomi, Hauser, Jenny, Kashirskaya, Nataliya, Kessler, Laurence, Lowdon, Jacqueline, Makukh, Halyna, Martin, Clémence, Morrison, Lisa, Nazareth, Dilip, Noordhoek, Jacquelien, O'Neill, Ciaran, Owen, Elizabeth, Oxley, Helen, Raraigh, Karen S., Raynal, Caroline, Robinson, Karen, Roehmel, Jobst, Schwarz, Carsten, Sermet, Isabelle, Shteinberg, Michal, Sinha, Ian, Takawira, Constance, van Mourik, Peter, Verkleij, Marieke, Waller, Michael D., Duff, Alistair

وصف الملف: text

العلاقة: https://eprints.soton.ac.uk/487818/1/PIIS1569199322013856.pdfTest; Southern, Kevin W., Castellani, Carlo and Lammertyn, Elise , et al. (2023) Standards of care for CFTR variant-specific therapy (including modulators) for people with cystic fibrosis. Journal of Cystic Fibrosis, 22 (1), 17-30. (doi:10.1016/j.jcf.2022.10.002 ).

الإتاحة: https://doi.org/10.1016/j.jcf.2022.10.002Test
https://eprints.soton.ac.uk/487818Test/
https://eprints.soton.ac.uk/487818/1/PIIS1569199322013856.pdfTest

المؤلفون: Glasscoe, Claire, Hope, Holly F., Lancaster, Gillian A., McCray, Gareth, West, Kiri, Patel, Latifa, Patel, Tulsi, Hill, Jonathan, Quittner, Alexandra L., Southern, Kevin W.

وصف الملف: text

العلاقة: https://centaur.reading.ac.uk/104208/8/Development%20and%20preliminary%20validation%20of%20the%20challenges%20of%20living%20with%20cystic%20fibrosis%20CLCF%20questionnaire%20a%2046%20item%20measure%20of%20treatment%20burden%20for.pdfTest; https://centaur.reading.ac.uk/104208/1/full%20accepted%20manuscript%20GPSH-2020-0656.R3%2029-11-2021.pdfTest; Glasscoe, Claire, Hope, Holly F., Lancaster, Gillian A., McCray, Gareth, West, Kiri, Patel, Latifa, Patel, Tulsi, Hill, Jonathan, Quittner, Alexandra L. and Southern, Kevin W. (2023) Development and preliminary validation of the challenges of living with cystic fibrosis (CLCF) questionnaire: a 46-item measure of treatment burden for parent/carers of children with CF. Psychology & Health, 38 (10). pp. 1309-1344. ISSN 1476-8321 doi: https://doi.org/10.1080/08870446.2021.2013483Test

الإتاحة: https://centaur.reading.ac.uk/104208Test/
https://centaur.reading.ac.uk/104208/8/Development%20and%20preliminary%20validation%20of%20the%20challenges%20of%20living%20with%20cystic%20fibrosis%20CLCF%20questionnaire%20a%2046%20item%20measure%20of%20treatment%20burden%20for.pdfTest
https://centaur.reading.ac.uk/104208/1/full%20accepted%20manuscript%20GPSH-2020-0656.R3%2029-11-2021.pdfTest

المؤلفون: Allen, Lucy, Allen, Lorna, Carr, Siobhan B., Davies, Gwyneth, Downey, Damian, Egan, Marie, Forton, Julian T., Gray, Robert, Haworth, Charles, Horsley, Alexander, Smyth, Alan R., Southern, Kevin W., Davies, Jane C.

مصطلحات موضوعية: General Physics and Astronomy, General Biochemistry, Genetics and Molecular Biology, General Chemistry, Multidisciplinary

العلاقة: https://nottingham-repository.worktribe.com/output/17087427Test; Nature Communications; Volume 14; Issue 1; https://nottingham-repository.worktribe.com/file/17087427/1/s41467-023-36244-2Test

الإتاحة: https://doi.org/10.1038/s41467-023-36244-2Test
https://nottingham-repository.worktribe.com/file/17087427/1/s41467-023-36244-2Test
https://nottingham-repository.worktribe.com/output/17087427Test

المؤلفون: Southern, Kevin, Castellani, Carlo, Lammertyn, Elise, Smyth, Alan, Vandevanter, Donald, van Koningsbruggen-Rietschel, Silke, Barben, Jürg, Bevan, Amanda, Brokaar, Edwin, Collins, Sarah, Connett, Gary, Daniels, Thomas W.V., Davies, Jane, Declercq, Dimitri, Gartner, Silvia, Gramegna, Andrea, Hamilton, Naomi, Hauser, Jenny, Kashirskaya, Nataliya, Kessler, Laurence, Lowdon, Jacqueline, Makukh, Halyna, Martin, Clémence, Morrison, Lisa, Nazareth, Dilip, Noordhoek, Jacquelien, O'Neill, Ciaran, Owen, Elizabeth, Oxley, Helen, Raraigh, Karen, Raynal, Caroline, Robinson, Karen, Roehmel, Jobst, Schwarz, Carsten, Sermet, Isabelle, Shteinberg, Michal, Sinha, Ian, Takawira, Constance, van Mourik, Peter, Verkleij, Marieke, Waller, Michael, Duff, Alistair

المساهمون: Physiologie & médecine expérimentale du Cœur et des Muscles U 1046 (PhyMedExp), Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS)-Université de Montpellier (UM), CHU Montpellier, Centre Hospitalier Régional Universitaire Montpellier (CHRU Montpellier)

المصدر: ISSN: 1569-1993.

مصطلحات موضوعية: [SDV]Life Sciences [q-bio]

العلاقة: hal-04029667; https://hal.science/hal-04029667Test; https://hal.science/hal-04029667/documentTest; https://hal.science/hal-04029667/file/2023%20%20%20Southern%20et%20al.,%20Standards%20of%20care%20for%20CFTR%20variant.pdfTest

الإتاحة: https://doi.org/10.1016/j.jcf.2022.10.002Test
https://hal.science/hal-04029667Test
https://hal.science/hal-04029667/documentTest
https://hal.science/hal-04029667/file/2023%20%20%20Southern%20et%20al.,%20Standards%20of%20care%20for%20CFTR%20variant.pdfTest

المؤلفون: McCray, Gareth, Hope, Holly, Southern, Kevin, Quittner, Alexandra, Hill, Jonathan, Glasscoe, Claire

المصدر: McCray , G , Hope , H , Southern , K , Quittner , A , Hill , J & Glasscoe , C 2023 , ' Development and validation of a short form psychometric tool assessing the caregiving Challenge of Living with Cystic Fibrosis (CLCF-SF) in a child ' , Psychology and Health . https://doi.org/10.1080/08870446.2023.2231489Test

مصطلحات موضوعية: Caregiver, child, cystic fibrosis, genetic algorithm, short-form, treatment burden

الإتاحة: https://doi.org/10.1080/08870446.2023.2231489Test
https://research.manchester.ac.uk/en/publications/a3371898-f16f-4a20-ae37-21d3d3333f64Test
http://www.scopus.com/inward/record.url?scp=85164532104&partnerID=8YFLogxKTest
https://www.mendeley.com/catalogue/a243881c-fff1-3519-906e-7eb311c7cbb9Test/

المؤلفون: Southern, Kevin, Addy, Charlotte, Bell, Scott, Bevan, Amanda, Borawska, Urzula, Gartner Tizzano, Silvia, Brown, Catherine

المساهمون: Institut Català de la Salut, Southern KW Department of Women's and Children's Health, University of Liverpool, Liverpool, UK. Addy C All Wales Adult Cystic Fibrosis Centre, University Hospital Llandough, Cardiff and Vale University Health Board, Cardiff, UK. Bell SC Department of Thoracic Medicine and Faculty of Medicine, The University of Queensland, The Prince Charles Hospital, Brisbane, Australia. Bevan A University Hospital Southampton NHS Foundation Trust, Southampton, United Kingdom. Borawska U Institute of Mother and Child in Warsaw, Cystic Fibrosis Department and Dziekanow Lesny Hospital, Cystic Fibrosis Center, Dziekanow Lesny, Poland. Brown C West Midlands Adult CF Centre, Heartlands Hospital Birmingham, UK. Gartner S Vall d’Hebron Hospital Universitari, Barcelona, Spain, Vall d'Hebron Barcelona Hospital Campus

المصدر: Scientia

مصطلحات موضوعية: Fibrosi quística - Tractament, Anomalies cromosòmiques, Decisió de grup, PHENOMENA AND PROCESSES::Genetic Phenomena::Genetic Variation::Mutation, INFORMATION SCIENCE::Information Science::Systems Analysis::Delphi Technique, DISEASES::Digestive System Diseases::Pancreatic Diseases::Cystic Fibrosis, Other subheadings::Other subheadings::/therapy, FENÓMENOS Y PROCESOS::fenómenos genéticos::variación genética::mutación, CIENCIA DE LA INFORMACIÓN::Ciencias de la información::análisis de sistemas::técnica Delfos, ENFERMEDADES::enfermedades del sistema digestivo::enfermedades pancreáticas::fibrosis quística, Otros calificadores::Otros calificadores::/terapia

وصف الملف: application/pdf

العلاقة: Journal of Cystic Fibrosis;23(1); https://doi.org/10.1016/j.jcf.2023.12.002Test; Southern K, Addy C, Bell S, Bevan A, Borawska U, Brown C, et al. Standards for the care of people with cystic fibrosis; establishing and maintaining health. J Cyst Fibros. 2024 Jan;23(1):12–28.; https://hdl.handle.net/11351/11298Test

الإتاحة: https://doi.org/10.1016/j.jcf.2023.12.002Test
https://hdl.handle.net/11351/11298Test