The DOI matches its Crossref record; 86 of the 88 references it cites were found in a registry or an index.
European Cystic Fibrosis Society Standards of Care: Framework for the Cystic Fibrosis Centre
Open accessAbstract
A significant increase in life expectancy in successive birth cohorts of people with cystic fibrosis (CF) is a result of more effective treatment for the disease. It is also now widely recognized that outcomes for patients cared for in specialist CF Centres are better than for those who are not. Key to the effectiveness of the specialist CF Centre is the multidisciplinary team (MDT), which should include consultants, clinical nurse specialist, microbiologist, physiotherapist, dietitian, pharmacist, clinical psychologist, social worker, clinical geneticist and allied healthcare professionals, all of whom should be experienced in CF care. Members of the MDT are also expected to keep up to date with developments in CF through continued professional development, attendance at conferences, auditing and involvement in research. Specialists CF Centres should also network with other Centres both nationally and internationally, and feed Centre data to registries in order to further the understanding of the disease. This paper provides a framework for the specialist CF Centre, including the organisation of the Centre and the individual roles of MDT members, as well as highlighting the value of CF organisations and disease registries.
Overview
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Verification
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
The cited source says what the claim attributes to it.
In the citing paper
“According to Conway et al., this significantly affects patient safety, and such a treatment team should comprise consultants, a clinical nurse, a microbiologist, a physiotherapist, a dietician, a pharmacist, a clinical psychologist, a social worker, a clinical geneticist, and other healthcare professionals, all of whom should be experienced in the care of patients with CF [4].”
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Citations
Cites
The Prognostic Value of Exercise Testing in Patients with Cystic Fibrosis
Nixon, P. A., Orenstein, D. M., Kelsey, S. F., & Doershuk, C. F. (1992) · New England Journal of Medicine · doi:10.1056/nejm199212173272504 · Cited by 629
Cystic fibrosis mortality and survival in the UK: 1947–2003
DODGE, J. A., Lewis, P. A., Stanton, M., & Wilsher, J. (2006) · European Respiratory Journal · doi:10.1183/09031936.00099506 · Cited by 627
Standards of care for patients with cystic fibrosis: a European consensus
Kerem, E., Conway, S., Elborn, J. S., & Heijerman, H. G. M. (2005) · Journal of Cystic Fibrosis · doi:10.1016/j.jcf.2004.12.002 · Cited by 477
Self-citationAerosol Deposition in Health and Disease
Darquenne, C. (2012) · Journal of Aerosol Medicine and Pulmonary Drug Delivery · doi:10.1089/jamp.2011.0916 · Cited by 453
Guidelines for the physiotherapy management of the adult, medical, spontaneously breathing patient
Bott, J., Blumenthal, S., Buxton, M., Ellum, S., Falconer, C., Garrod, R., Harvey, A., Hughes, T., Lincoln, M., Mikelsons, C., et al. (2009) · Thorax · doi:10.1136/thx.2008.110726 · Cited by 451
Saiman, L. M. (2003) · American Journal of Infection Control · doi:10.1067/mic.2003.78 · Cited by 307
Yen, E. H., Quinton, H., & Borowitz, D. (2013) · The Journal of Pediatrics · doi:10.1016/j.jpeds.2012.08.040 · Cited by 306
BTS guidelines for home oxygen in children
Balfour-Lynn, I. M., Field, D. J., Gringras, P., Hicks, B., Jardine, E., Jones, R. C., Magee, A. G., Primhak, R. A., Samuels, M. P., Shaw, N. J., et al. (2009) · Thorax · doi:10.1136/thx.2009.116020 · Cited by 250
Self-citationMahadeva, R., DODGE, J. A., Webb, A. K., Westerbeek, R. C., Carroll, N. R., Dodd, M. E., Bilton, D., & Lomas, D. A. (1998) · BMJ · doi:10.1136/bmj.316.7147.1771 · Cited by 248
Guidelines for the management of pregnancy in women with cystic fibrosis
Edenborough, F. P., Borgo, G., Knoop, C., Lannefors, L., Mackenzie, W. E., Madge, S. L., Morton, A. M., Oxley, H., Touw, D. J., Benham, M., et al. (2007) · Journal of Cystic Fibrosis · doi:10.1016/j.jcf.2007.10.001 · Cited by 245
Self-citation
Flagged first, then by citations
2 of the 88 references couldn’t be matched to a known paper.
Cited by
Sorted by citations
Items 201–232 of 232
EFEITOS DA MUSICOTERAPIA NO TRATAMENTO DE CRIANÇAS COM TRANSTORNO DO ESPECTRO AUTISTA (TEA)
Moreira, A. C. D. B., & Oliveira, R. C. (2023) · Amplla Editora eBooks · doi:10.51859/amplla.amc256.1123-25
Abordagens em medicina: ciência e prática
de Figueiredo, B. Q., Caixeta, W. D. O., & Andrade, A. F. (2023) · Amplla Editora eBooks · doi:10.51859/amplla.amc256.1123-0
EFLÚVIO TELÓGENO PÓS-INFECÇÃO POR SARS-COV-2: EVIDÊNCIAS ATUAIS
Vasconcelos, L. V. T., & Oliveira, R. C. (2023) · Amplla Editora eBooks · doi:10.51859/amplla.amc256.1123-11
Vieira, K. D. I., & Oliveira, R. C. (2023) · Amplla Editora eBooks · doi:10.51859/amplla.amc256.1123-21
SANGRAMENTO UTERINO ANORMAL (SUA): PRINCIPAIS CAUSAS E ETIOLOGIAS
Moreira, L. S. D. B., & Oliveira, R. C. (2023) · Amplla Editora eBooks · doi:10.51859/amplla.amc256.1123-1
FIBROSE CÍSTICA NO PACIENTE PEDIÁTRICO: DESAFIOS E COMPLICAÇÕES EM CONTEXTO CLÍNICO
Julio, B. R., Costa, C. S. S., Vitorino, E. B., Santos, L. M. D. S., Loureiro, L. S., & Ferrari, E. (2023) · Amplla Editora eBooks · doi:10.51859/amplla.amc256.1123-10
O IMPACTO DO EXERCÍCIO FÍSICO NA DOR CRÔNICA
Regis, I. C., & Oliveira, R. C. (2023) · Amplla Editora eBooks · doi:10.51859/amplla.amc256.1123-17
A INFLUÊNCIA DA AMAMENTAÇÃO NA PREVENÇÃO À OBESIDADE INFANTIL
Santos, G. M., & Oliveira, R. C. (2023) · Amplla Editora eBooks · doi:10.51859/amplla.amc256.1123-13
TRANSTORNO BIPOLAR: ASPECTOS GERAIS SOBRE O DIAGNÓSTICO E ESTRATÉGIAS TERAPÊUTICAS
Brandão, L. F. P., & Brandão, U. R. (2023) · Amplla Editora eBooks · doi:10.51859/amplla.amc256.1123-14
Transición en las enfermedades crónicas gastrointestinales. Del cuidado pediátrico al del adulto
D’Agostino, D., Leta, K., Cunto, C. L. D., Contreras, M. B., Costaguta, A. C., Furnes, R., Lande, H., Mulli, V., Novoa, J. J., & Vallejos, P. (2023) · Archivos Argentinos de Pediatria · doi:10.5546/aap.2022-02933
Cystic fibrosis: management of non-respiratory manifestations
(2023) · Pharmaceutical journal/The pharmaceutical journal · doi:10.1211/pj.2023.1.185428
Gold, A., Wray, J., Kosmach‐Park, B., Bannister, L., Wichart, J., Graham, A., Piotrowski, C. C., Mayersohn, G. S., Shellmer, D. A., & Patterson, C. F. (2023) · Pediatric Transplantation · doi:10.1111/petr.14541
Er, B., & Damadoğlu, E. (2023) · Springer eBooks · doi:10.1007/978-3-031-22483-6_86-1
Hill, M., Brown, P. S., Sherwood, S., Hill, J., O'Dell, K. K., Rekow, T., & Stamper, S. M. (2023) · Journal of Cystic Fibrosis · doi:10.1016/s1569-1993(23)01358-9
Wang, J., & Pettit, R. S. (2023) · Journal of Cystic Fibrosis · doi:10.1016/s1569-1993(23)01356-5
431 Evolution of pharmacy services at U.S. CFF-accredited centers: 10 years later
Grube, P., Autry, E. B., Kormelink, L. N., Young, D. C., Zobell, J. T., Bhakta, Z. N., & Kuhn, R. J. (2023) · Journal of Cystic Fibrosis · doi:10.1016/s1569-1993(23)01357-7
Cystic Fibrosis – results of CFTR modulators in Croatia
Tješić-Drinković, D., Bambir, I., Tješić-Drinković, D., Dugac, A. V., Bambiar, I., Baretić, M., Basara, L., Bogdanić, A., Bzik, D., Džubur, F., et al. (2023) · Liječnički vjesnik · doi:10.26800/lv-145-supl5-27
The use of medium-chain triglycerides in patients with cystic fibrosis
Zarubina, V., Высоколова, О. В., Mukhina, M. A., Yakushina, Е. E., & Kekeeva, T. N. (2024) · Лечащий врач · doi:10.51793/os.2024.27.3.016
Kappler, M., Bootz, F., & Griese, M. (2024) · Therapie der Krankheiten im Kindes- und Jugendalter · doi:10.1007/978-3-662-65542-9_18
Şahbat, Y., Kalyoncu, M., Gündoğdu, M., Ergenekon, P., Gökdemi̇r, Y., Eralp, E. E., Karadag, B. T., & Akgülle, A. H. (2025) · Journal of Pediatric Orthopaedics · doi:10.1097/bpo.0000000000002947
Integrated Care for Rare Diseases
Castro, R., de Chalendar, M., Vajda, I., van Breukelen, S., Courbier, S., Hedley, V., Montefusco, M., Nielsen, S. J., & Dan, D. (2025) · Springer eBooks · doi:10.1007/978-3-031-25376-8_44-1
Integrated Care for Rare Diseases
Castro, R., de Chalendar, M., Vajda, I., van Breukelen, S., Courbier, S., Hedley, V., Montefusco, M., Nielsen, S. J., & Dan, D. (2025) · Springer eBooks · doi:10.1007/978-3-031-96286-8_44
Cystic Fibrosis: A Review Study
Roy, R., Das, S., Paul, S., & Jajodia, D. (2025) · European Medical Journal · doi:10.33590/emj/lfgs7282
Prise en charge sociale des patients adultes suivis pour une mucoviscidose
Dury, S., Mulette, P., Vivien, A., Yucel-Farcet, H., Longueville, E., Boutahir, A., Ravoninjatovo, B., Deforge, A., Griffon, M., Deschamps, F., et al. (2025) · Revue des Maladies Respiratoires · doi:10.1016/j.rmr.2025.11.002
Supporting Physiotherapy and Exercise for People With Cystic Fibrosis in Low‐Resource Settings
Walsh, A., Donadio, M. V. F., D'Agostino, G., Wood, H., Southern, K. W., & Morrow, B. M. (2026) · Pediatric Pulmonology · doi:10.1002/ppul.71459
Braeckel, E. V., Braun, A. T., Simmonds, N. J., Barry, P. J., Davies, J. C., Egan, M. E., Lapey, A., Mall, M. A., McKone, E. F., Peckham, D. G., et al. (2026) · Journal of Cystic Fibrosis · doi:10.1016/j.jcf.2026.03.016
Self-citationEfficiency of regular follow-up in patients with cystic fibrosis in the Moscow region
Odinaeva, N. D., Fatkhullina, I. R., Kovalev, V. N., Tsurkin, G. V., Voronkova, A. Y., Zhekaite, E. K., & Kondratyeva, E. I. (2026) · PULMONOLOGIYA · doi:10.18093/0869-0189-2026-36-2-228-236
Facing the challenges of treating rare diseases: a scoping review of the role of pharmacists
Cunico, C., Fuchina, M. N., Rover, M. R. M., Santana, R. S., & Leite, S. N. (2026) · International Journal of Pharmacy Practice · doi:10.1093/ijpp/riag068
Smith, C., Chadwick, H. K., Peckham, D. G., Hill, K., Voivod, O., Krasnyk, M., Gökdemi̇r, Y., Gorgun, I., Özdemi̇rci̇oğlu, F., Makukh, H., et al. (2026) · Pediatric Pulmonology · doi:10.1002/ppul.71764
Self-citationExploring national support mechanisms for European reference network centres
Šimka, V., Jedličková, J., Navrátilová, N., Hynek, O., Sand, V., Murel, M., Pereira, A. M., Doležalová, P., & Schaefer, F. S. (2026) · European Journal of Medical Genetics · doi:10.1016/j.ejmg.2026.105099
Metadata
- Authors
- Conway, S., Balfour-Lynn, I. M., De Rijcke, K., Drevinek, P., Foweraker, J., Havermans, T., Heijerman, H., Lannefors, L., Lindblad, A., Macek, M., Madge, S., Moran, M., Morrison, L., Morton, A., Noordhoek, J., Sands, D., Vertommen, A., & Peckham, D.
- Affiliations
- Leeds Teaching Hospitals NHS Trust (GB)
- Royal Brompton Hospital (GB)
- Papworth Hospital NHS Foundation Trust (GB)
- Universitair Ziekenhuis Leuven (BE)
- Haga Hospital (NL)
- Copenhagen University Hospital (DK)
- Drottning Silvias barn- och ungdomssjukhus (SE)
- St. Vincent's University Hospital (IE)
- Gartnavel General Hospital (GB)
- St James's University Hospital (GB)
- Instytut Matki i Dziecka (PL)
- Corresponding author
- Conway, Steven
- ORCID
- Venue
- Journal of Cystic Fibrosis
- Publisher
- Elsevier BV
- Published
- 2014-05
- Volume
- 13
- Pages
- S3-S22
- ISSN
- 1569-1993 (ISSN-L)
- PMC
- PMC7105239
- OpenAlex
- W2151436444
- Cited by
- 232
- References
- 88
- Citations by year
- 2026: 8 · 2025: 16 · 2024: 17 · 2023: 39 · 2022: 15 · 2021: 18 · 2020: 19 · 2019: 17 · 2018: 17 · 2017: 17 · 2016: 25 · 2015: 14 · 2014: 9
- FWCI
- 3.71
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Journal of Cystic Fibrosis (publishedVersion, cc-by-nc-nd)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- White Rose Research Online (University of Leeds, The University of Sheffield, University of York) (acceptedVersion)
- Topics
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Cystic Fibrosis Research Advances
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Clinical practice guidelines implementation
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Adolescent and Pediatric Healthcare
- Keywords
- multidisciplinary team, standard of care, clinical nurse specialists, disease registries, professional development, patient outcomes, life expectancy
- MeSH terms
- Adolescent, Adult, Child, Child, Preschool, Cystic Fibrosis, Europe, Health Services Accessibility, Hospitals, Special, Humans, Patient Care Team, Societies, Medical, Young Adult, Standard of Care
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
