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1. The feasibility of home monitoring of young people with cystic fibrosis: Results from CLIMB-CF

Author

Edmondson, C., Westrupp, N., Seddon, P., Olden, C., Wallis, C., Dawson, C., Brodlie, M., Baxter, F., McCormick, J., MacFarlane, S., Rice, D., Macleod, A., Brooker, R., Connon, M., Ghayyda, S., Blaikie, L., Thursfield, R., Brown, L., Price, A., Fleischer, E., Itterman, J., Hughes, D., Barrett, P., Surette, M., Donnelly, C., Mateos-Corral, D., Padley, G., Wallenburg, J., Brownlee, K., Alton, E.W.F.W., Bush, A., and Davies, J.C.

Published
2022
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16. P083 Clinical progression of SARS-CoV-2 infection in people with cystic fibrosis: a global observational study

Author

McClenaghan, E., primary, Cosgriff, R., additional, Brownlee, K., additional, Ahern, S., additional, Burgel, P.-R., additional, Byrnes, C.A., additional, Colombo, C., additional, Corvol, H., additional, Cheng, S.Y., additional, Daneau, G., additional, Elbert, A., additional, Faro, A., additional, Goss, C.H., additional, Gulmans, V., additional, Gutierrez, H., additional, de Monestrol, I., additional, Jung, A., additional, Nährlich, L., additional, Kashirskaya, N., additional, Marshall, B.C., additional, McKone, E., additional, Middleton, P.G., additional, Mondejar-Lopez, P., additional, Pastor-Vivero, M.D., additional, Padoan, R., additional, Rizvi, S., additional, Ruseckaite, R., additional, Salvatore, M., additional, Stephenson, A.L., additional, da Silva Filho, L.V.R., additional, Melo, J., additional, Zampoli, M., additional, Abdrakhmanov, O., additional, Harutyunyan, S., additional, and Carr, S.B., additional

Published
2021
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19. ePS5.09 CLInical Monitoring and Biomarkers to stratify severity and predict outcomes in children with cystic fibrosis (CLIMB-CF): usability results from our feasibility study

Author

Edmondson, C., primary, Westrupp, N., additional, Seddon, P., additional, Olden, C., additional, Wallis, C., additional, Dawson, C., additional, Brodlie, M., additional, Baxter, F., additional, McCormick, J., additional, Connon, M., additional, Blaikie, L., additional, Thursfield, R., additional, Brown, L., additional, Price, A., additional, Fleischer, E., additional, Hughes, D., additional, Barrett, P., additional, Mak, D., additional, Wallenburg, J., additional, Brownlee, K., additional, Alton, E.W.F.W., additional, Bush, A., additional, and Davies, J.C., additional

Published
2020
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21. Fair selection of participants in clinical trials: The challenge to push the envelope further

Author

Davies, JC, Scott, S, Dobra, R, Brendell, R, Brownlee, K, Carr, SB, Cosgriff, R, Simmonds, NJ, London Network of Clinical Trials Accelerator Platform sites, Jahan, R, Jones, A, Matthews, J, Brown, S, Galono, K, Miles, K, Pao, C, Shafi, N, Watson, D, Orchard, C, Davies, G, Pike, K, Shah, S, Bossley, CJ, Fong, T, Macedo, P, Ruiz, G, Waller, M, and Baker, L

Subjects
Pulmonary and Respiratory Medicine, medicine.medical_specialty, Registry, Cystic Fibrosis, Allocation, Respiratory System, Eligibility Determination, Ethics, Research, Resource Allocation, Clinical trials, medicine, Humans, Intensive care medicine, Selection (genetic algorithm), Clinical Trials as Topic, Health Equity, business.industry, Patient Selection, Equity (finance), 1103 Clinical Sciences, Equity, Clinical trial, London Network of Clinical Trials Accelerator Platform sites, Pediatrics, Perinatology and Child Health, business, Envelope (motion), Information Systems
Published
2019

29. P223 Urinary Matrix Metalloproteinase-9 (MMP-9) is not a biomarker of pulmonary exacerbation in cystic fibrosis

Author

Edmondson, C., primary, Westrupp, N., additional, Coates, M., additional, Fletcher, O., additional, Fenn, D., additional, Seddon, P., additional, Olden, C., additional, Wallis, C., additional, Dawson, C., additional, Brodlie, M., additional, Baxter, F., additional, McCormick, J., additional, Connon, M., additional, Blaikie, L., additional, Thursfield, R., additional, Brown, L., additional, Price, A., additional, Itterman, J., additional, Hughes, D., additional, Donnelly, C., additional, Mak, D., additional, Wallenburg, J., additional, Brownlee, K., additional, Alton, E.W.F.W., additional, Bush, A., additional, and Davies, J.C., additional

Published
2019
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30. ePS5.07 CLInical Monitoring and Biomarkers to stratify severity and predict outcomes in children with cystic fibrosis (CLIMB-CF): results from the feasibility study

Author

Edmondson, C., primary, Westrupp, N., additional, Seddon, P., additional, Olden, C., additional, Wallis, C., additional, Dawson, C., additional, Brodlie, M., additional, Baxter, F., additional, McCormick, J., additional, Connon, M., additional, Blaikie, L., additional, Thursfield, R., additional, Brown, L., additional, Price, A., additional, Fleischer, E., additional, Hughes, D., additional, Barrett, P., additional, Haider, S., additional, Fontanella, S., additional, Mak, D., additional, Wallenburg, J., additional, Brownlee, K., additional, Alton, E.W.F.W., additional, Bush, A., additional, and Davies, J.C., additional

Published
2019
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35. Prospective surveillance of pediatric invasive group A Streptococcus infection.

Author

Crawford N., Brownlee K., Lee D., Gibson M., Smeesters P., Gonis G., Steer A.C., Ojaimi S., Buttery J., Baker C., Azzopardi K., Ching N.S., McMinn A., Crawford N., Brownlee K., Lee D., Gibson M., Smeesters P., Gonis G., Steer A.C., Ojaimi S., Buttery J., Baker C., Azzopardi K., Ching N.S., and McMinn A.

Abstract

Background. Invasive group A Streptococcus (GAS) disease has an incidence in high-income countries of 3 to 5 per 100 000 per annum and a case-fatality ratio of 10% to 15%. Although these rates are comparable to those of invasive meningococcal disease in Australia before vaccine introduction, invasive GAS disease currently requires reporting in only 2 jurisdictions. Methods. Data were collected prospectively through active surveillance at the Royal Children's Hospital, Melbourne (October 2014 to September 2016). Isolation of GAS from a sterile site was required for inclusion. Comprehensive demographic and clinical data were collected, and emm typing was performed on all isolates. Disease was considered severe if the patient required inotropic support or mechanical ventilation. Results. We recruited 28 patients. The median age of the patients was 3.5 years (range, 4 days to 11 years). Ten (36%) patients had severe disease. Fifteen (54%) children had presented to a medical practitioner for review in the 48 hours before their eventual admission, including 7 of the 10 patients with severe GAS infection. Complications 6 months after discharge persisted in 21% of the patients. emm1 was the most common emm type (29%). Conclusion. We found considerable short- and longer-term morbidity associated with pediatric invasive GAS disease in our study. Disease manifestations were frequently severe, and more than one-third of the patients required cardiorespiratory support. More than one-half of the patients attended a medical practitioner for assessment but were discharged in the 48-hour period before admission, which suggests that there might have been a window for earlier diagnosis. Our methodology was easy to implement as a surveillance system.Copyright © The Author(s) 2017. Published by Oxford University Press on behalf of The Journal of the Pediatric Infectious Diseases Society. All rights reserved.

Published
2019

36. A European consensus for the evaluation and management of infants with an equivocal diagnosis following newborn screening for cystic fibrosis

Author

Mayell, S. J., Munck, A., Craig, J. V., Sermet, I., Brownlee, K. G., Schwarz, M. J., Castellani, C., Southern, K. W., Working Group Balascakova, European Cystic Fibrosis Society Neonatal Screening M., Barben, J., Gabriel, B., Brownlee, K., Burrows, E., Bush, A., Corbetta, C., Dankert Roelse, J., De Boeck, K., Desai, M., Dodge, J., Doull, I., Eichler, I., Green, A., Huet, F., Holubova, A., Iapichino, L., Lebecque, P., Macek, M., Melotti, P., Padoan, R., Quattrucci, Serena, Reid, A., Renner, S., Roussey, M., Satish, R., Sands, D., Seia, M., Skalicka, V., Southern, K., Schwarz, M., Taylor, C., Taccetti, G., Tiddens, H., Tummler, B., Vavrova, V., Votava, F., Weller, P., and Wilschanski, M.

Subjects
Pulmonary and Respiratory Medicine, medicine.medical_specialty, Pediatrics, Cystic Fibrosis, education, Modified delphi, MEDLINE, Cystic Fibrosis Transmembrane Conductance Regulator, cystic fibrosis, gene analysis, management, neonatal screening, sweat test, Sodium Chloride, Cystic fibrosis, Neonatal Screening, Gene analysis, medicine, Humans, Pediatrics, Perinatology, and Child Health, Genetic Testing, Sweat, Sweat test, Genetic testing, Newborn screening, medicine.diagnostic_test, Sweat testing, business.industry, Infant, Newborn, medicine.disease, Infant newborn, Management, Family medicine, Mutation, Pediatrics, Perinatology and Child Health, business
Abstract

Screening newborns for cystic fibrosis (CF) is considered to be an ethical undertaking in regions with a significant incidence of the condition. Current screening protocols result in recognition of infants with an equivocal diagnosis. A survey of European practice suggested inconsistencies in the evaluation and management of these infants.We have undertaken a consensus process using a modified Delphi method. This has enabled input of CF specialists from a wide geographical area to a rigorous process that has provided a clear pathway to a consensus statement. A core group produced 21 statements, which were modified over a series of three rounds (including a meeting arranged at the European CF Conference). A final document of 19 statements was produced, all of which achieved a satisfactory level of consensus. The statements cover four themes; sweat testing, further assessments and investigations, review arrangements and database.This consensus document will provide guidance to CF specialists with established screening programmes and those who are in the process of implementing newborn screening in their region.

Published
2009
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37. The moral status of civil disobedience

Author

Brownlee, K, Raz, J, and Tasioulas, J

Subjects
Philosophy, Judgment (Ethics), Civil disobedience, Government, Resistance to, Law
Abstract

This dissertation examines the moral character of civil disobedience. The discussion begins with a conceptual analysis of civil disobedience which eschews standard definitions in favour of a paradigm case approach, highlighting a parallel between the communicative aspects of civil disobedience and the communicative aspects of lawful punishment by the state. Foundations for a moral evaluation of civil disobedience are then laid down through, first, an examination of the nature of wrongdoing and justification, and second, a critique of contemporary defences of political obligation. The absence of political obligation, it is argued, does not immediately justify civil disobedience even in reprehensible regimes because, in all contexts, adherence to the law and disobedience of the law must be judged on the basis of their character and consequences. Various considerations relevant to the justifiability of civil disobedience are then examined before the discussion turns to the three principal claims defended in this thesis. The first is that people have a moral right to engage in civil disobedience irrespective of both the political regime and the merits of their cause. The second is that the reasons for which people engage in civil disobedience may be understood in terms of a pursuit of ideals. When motivated by a deep commitment to the genuine ideals of their society, disobedients may be said to demonstrate responsible citizenship. The third claim is that the law should treat disobedients differently from other offenders. When civil disobedience is morally justified, and sometimes when it is not, the law has reason to be lenient to its practitioners. In defending these claims, this discussion critiques not only the 'classical' narrow conception of civil disobedience as a public, non-violent, conscientious breach of law for which disobedients are willing to be punished, but also broader conceptions of civil disobedience which take a modest view of its justifiability and accord it limited status as a moral right.

Published
2016

43. A European consensus for the evaluation and management of infants with an equivocal diagnosis following newborn screening for cystic fibrosis

Author

UCL - (SLuc) Service de pédiatrie générale, UCL - SSS/IREC/PNEU - Pôle de Pneumologie, ORL et Dermatologie, UCL - (SLuc) Service de pneumologie, Mayell, S J, Munck, A, Craig, J V, Sermet, I, Brownlee, K G, Schwarz, M J, Castellani, C, Southern, K W, European Cystic Fibrosis Society Neonatal Screening Working Group, Lebecque, Patrick, UCL - (SLuc) Service de pédiatrie générale, UCL - SSS/IREC/PNEU - Pôle de Pneumologie, ORL et Dermatologie, UCL - (SLuc) Service de pneumologie, Mayell, S J, Munck, A, Craig, J V, Sermet, I, Brownlee, K G, Schwarz, M J, Castellani, C, Southern, K W, European Cystic Fibrosis Society Neonatal Screening Working Group, and Lebecque, Patrick

Abstract

Screening newborns for cystic fibrosis (CF) is considered to be an ethical undertaking in regions with a significant incidence of the condition. Current screening protocols result in recognition of infants with an equivocal diagnosis. A survey of European practice suggested inconsistencies in the evaluation and management of these infants. We have undertaken a consensus process using a modified Delphi method. This has enabled input of CF specialists from a wide geographical area to a rigorous process that has provided a clear pathway to a consensus statement. A core group produced 21 statements, which were modified over a series of three rounds (including a meeting arranged at the European CF Conference). A final document of 19 statements was produced, all of which achieved a satisfactory level of consensus. The statements cover four themes; sweat testing, further assessments and investigations, review arrangements and database. This consensus document will provide guidance to CF specialists with established screening programmes and those who are in the process of implementing newborn screening in their region.

Published
2009

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