A BEAT-PCD consensus statement: a core outcome set for pulmonary disease interventions in primary ciliary dyskinesia

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dc.contributorSistema FMUSP-HC: Faculdade de Medicina da Universidade de São Paulo (FMUSP) e Hospital das Clínicas da FMUSP
dc.contributor.authorKOS, Renate
dc.contributor.authorGOUTAKI, Myrofora
dc.contributor.authorKOBBERNAGEL, Helene E.
dc.contributor.authorRUBBO, Bruna
dc.contributor.authorSHOEMARK, Amelia
dc.contributor.authorALIBERTI, Stefano
dc.contributor.authorALTENBURG, Josje
dc.contributor.authorANAGNOSTOPOULOU, Pinelopi
dc.contributor.authorATHANAZIO, Rodrigo A.
dc.contributor.authorBEYDON, Nicole
dc.contributor.authorDELL, Sharon D.
dc.contributor.authorEMIRALIOGLU, Nagehan
dc.contributor.authorFERKOL, Thomas W.
dc.contributor.authorLOEBINGER, Michael R.
dc.contributor.authorLORENT, Natalie
dc.contributor.authorMAITRE, Bernard
dc.contributor.authorMARTHIN, June
dc.contributor.authorMORGAN, Lucy C.
dc.contributor.authorNIELSEN, Kim G.
dc.contributor.authorRINGSHAUSEN, Felix C.
dc.contributor.authorSHTEINBERG, Michal
dc.contributor.authorTIDDENS, Harm A. W. M.
dc.contributor.authorZEE, Anke H. Maitland-Van der
dc.contributor.authorCHALMERS, James D.
dc.contributor.authorLUCAS, Jane S. A.
dc.contributor.authorHAARMAN, Eric G.
dc.date.accessioned2024-04-05T19:46:26Z
dc.date.available2024-04-05T19:46:26Z
dc.date.issued2024
dc.description.abstractBackground Consistent use of reliable and clinically appropriate outcome measures is a priority for clinical trials, with clear definitions to allow comparability. We aimed to develop a core outcome set (COS) for pulmonary disease interventions in primary ciliary dyskinesia (PCD). Methods A multidisciplinary international PCD expert panel was set up. A list of outcomes was created based on published literature. Using a modified three-round e-Delphi technique, the panel was asked to decide on relevant end-points related to pulmonary disease interventions and how they should be reported. First, inclusion of an outcome in the COS was determined. Second, the minimum information that should be reported per outcome. The third round finalised statements. Consensus was defined as >= 80% agreement among experts. Results During the first round, experts reached consensus on four out of 24 outcomes to be included in the COS. Five additional outcomes were discussed in subsequent rounds for their use in different subsettings. Consensus on standardised methods of reporting for the COS was reached. Spirometry, health-related quality-of-life scores, microbiology and exacerbations were included in the final COS. Conclusion This expert consensus resulted in a COS for clinical trials on pulmonary health among people with PCD.eng
dc.description.indexPubMed
dc.description.indexScopus
dc.description.indexDimensions
dc.description.indexWoS
dc.description.sponsorshipEuropean Respiratory Society
dc.identifier.citationERJ OPEN RESEARCH, v.10, n.1, article ID 00115-2023, 11p, 2024
dc.identifier.doi10.1183/23120541.00115-2023
dc.identifier.eissn2312-0541
dc.identifier.urihttps://observatorio.fm.usp.br/handle/OPI/59294
dc.language.isoeng
dc.publisherEUROPEAN RESPIRATORY SOC JOURNALS LTDeng
dc.relation.ispartofErj Open Research
dc.rightsopenAccesseng
dc.rights.holderCopyright EUROPEAN RESPIRATORY SOC JOURNALS LTDeng
dc.subject.wosRespiratory Systemeng
dc.titleA BEAT-PCD consensus statement: a core outcome set for pulmonary disease interventions in primary ciliary dyskinesiaeng
dc.typearticleeng
dc.type.categoryoriginal articleeng
dc.type.versionpublishedVersioneng
dspace.entity.typePublication
hcfmusp.affiliation.countryBélgica
hcfmusp.affiliation.countryInglaterra
hcfmusp.affiliation.countryCanadá
hcfmusp.affiliation.countryFrança
hcfmusp.affiliation.countryChipre
hcfmusp.affiliation.countryHolanda
hcfmusp.affiliation.countryItália
hcfmusp.affiliation.countrySuíça
hcfmusp.affiliation.countryEscócia
hcfmusp.affiliation.countryDinamarca
hcfmusp.affiliation.countryEstados Unidos
hcfmusp.affiliation.countryIsrael
hcfmusp.affiliation.countryAlemanha
hcfmusp.affiliation.countryAustrália
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hcfmusp.affiliation.countryisoca
hcfmusp.affiliation.countryisobe
hcfmusp.affiliation.countryisoau
hcfmusp.affiliation.countryisode
hcfmusp.affiliation.countryisoil
hcfmusp.author.externalKOS, Renate:Univ Amsterdam, Amsterdam Univ Med Ctr Loc AMC, Dept Pulm Med, Amsterdam, Netherlands
hcfmusp.author.externalGOUTAKI, Myrofora:Univ Bern, Inst Social & Prevent Med, Bern, Switzerland; Univ Bern, Childrens Univ Hosp Bern, Paediat Resp Med, Bern, Switzerland
hcfmusp.author.externalKOBBERNAGEL, Helene E.:Rigshosp, Copenhagen Univ Hosp, Danish Primary Ciliary Dyskinesia Ctr, Paediat Pulm Serv,Dept Paediat & Adolescent Med, Copenhagen, Denmark; Univ Copenhagen, Dept Clin Med, Copenhagen, Denmark
hcfmusp.author.externalRUBBO, Bruna:Univ Southampton, Sch Hlth Sci, Southampton, Hants, England; Univ Southern Calif, Keck Sch Med, Dept Populat & Publ Hlth Sci, Los Angeles, CA 90007 USA
hcfmusp.author.externalSHOEMARK, Amelia:Univ Dundee, Sch Med, Div Mol & Clin Med, Dundee, Scotland
hcfmusp.author.externalALIBERTI, Stefano:Humanitas Univ, Dept Biomed Sci, Milan, Italy; IRCCS Humanitas Res Hosp, Resp Unit, Milan, Italy
hcfmusp.author.externalALTENBURG, Josje:Univ Amsterdam, Amsterdam Univ Med Ctr Loc AMC, Dept Pulm Med, Amsterdam, Netherlands
hcfmusp.author.externalANAGNOSTOPOULOU, Pinelopi:Univ Cyprus, Med Sch, Nicosia, Cyprus
hcfmusp.author.externalBEYDON, Nicole:Sorbonne Univ, INSERM, Pulm Div, U938, Paris, France; Hop Armand Trousseau, Unite Explorat Fonct Resp, Paris, France
hcfmusp.author.externalDELL, Sharon D.:Univ British Columbia, Fac Med, Dept Paediat, Vancouver, BC, Canada; BC Childrens Hosp, Prov Hlth Serv Author, Pediat Resp Med, Vancouver, BC, Canada
hcfmusp.author.externalEMIRALIOGLU, Nagehan:Hacettepe Univ, Dept Pediat Pulmonol, Fac Med, Ankara, Turkiye
hcfmusp.author.externalFERKOL, Thomas W.:Univ N Carolina, Dept Pediat, Sch Med, Chapel Hill, NC USA; Marsico Lung Inst, Chapel Hill, NC USA
hcfmusp.author.externalLOEBINGER, Michael R.:Royal Brompton Hosp, Dept Resp Med, London, England; Harefield Hosp, Dept Resp Med, London, England; Imperial Coll London, Natl Heart & Lung Inst, London, England
hcfmusp.author.externalLORENT, Natalie:Univ Hosp Leuven, Dept Pediat, Leuven, Belgium
hcfmusp.author.externalMAITRE, Bernard:Hop Henri Mondor, Serv Pneumol, Creteil, France; Ctr Hosp Intercommunal Creteil, AP HP, Creteil, France
hcfmusp.author.externalMARTHIN, June:Rigshosp, Copenhagen Univ Hosp, Danish Primary Ciliary Dyskinesia Ctr, Paediat Pulm Serv,Dept Paediat & Adolescent Med, Copenhagen, Denmark
hcfmusp.author.externalMORGAN, Lucy C.:Concord Repatriat & Gen Hosp, Dept Microbiol & Infect Dis, NSW Hlth Pathol, Sydney, NSW, Australia
hcfmusp.author.externalNIELSEN, Kim G.:Rigshosp, Copenhagen Univ Hosp, Danish Primary Ciliary Dyskinesia Ctr, Paediat Pulm Serv,Dept Paediat & Adolescent Med, Copenhagen, Denmark; Univ Copenhagen, Dept Clin Med, Copenhagen, Denmark
hcfmusp.author.externalRINGSHAUSEN, Felix C.:German Ctr Lung Res DZL, Hannover Med Sch MHH, Dept Resp Med, Biomed Res End Stage & Obstruct Lung Dis Hannover, Hannover, Germany; European Reference Network Rare & Complex Lung Di, Frankfurt, Germany
hcfmusp.author.externalSHTEINBERG, Michal:Technion Israel Inst Technol, Rappaport Fac Med, Haifa, Israel; Carmel Hosp, Pulmonol Inst, Haifa, Israel; Carmel Hosp, CF Ctr, Haifa, Israel
hcfmusp.author.externalTIDDENS, Harm A. W. M.:Erasmus Mc Sophia Childrens Hosp, Dept Pediat Pulmonol & Allergol, Rotterdam, Netherlands; Erasmus MC Sophia Childrens Hosp, Dept Radiol, Rotterdam, Netherlands; Thirona, Nijmegen, Netherlands
hcfmusp.author.externalZEE, Anke H. Maitland-Van der:Univ Amsterdam, Amsterdam Univ Med Ctr Loc AMC, Dept Pulm Med, Amsterdam, Netherlands; Univ Amsterdam, Emma Childrens Hosp, Dept Paediat Resp Med & Allergy, Med Ctr, Amsterdam, Netherlands
hcfmusp.author.externalCHALMERS, James D.:Univ Dundee, Sch Med, Div Mol & Clin Med, Dundee, Scotland
hcfmusp.author.externalLUCAS, Jane S. A.:Univ Southampton, Fac Med, Sch Clin & Expt Sci, Southampton, Hants, England; Univ Hosp Southampton NHS Fdn Trust, Primary Ciliary Dyskinesia Ctr, Southampton, Hants, England
hcfmusp.author.externalHAARMAN, Eric G.:Univ Amsterdam, Emma Childrens Hosp, Dept Paediat Resp Med & Allergy, Med Ctr, Amsterdam, Netherlands
hcfmusp.citation.scopus0
hcfmusp.contributor.author-fmusphcRODRIGO ABENSUR ATHANAZIO
hcfmusp.description.articlenumber00115-2023
hcfmusp.description.issue1
hcfmusp.description.volume10
hcfmusp.origemWOS
hcfmusp.origem.dimensionspub.1165083734
hcfmusp.origem.pubmed38196895
hcfmusp.origem.scopus2-s2.0-85182864524
hcfmusp.origem.wosWOS:001141090300001
hcfmusp.publisher.citySHEFFIELDeng
hcfmusp.publisher.countryENGLANDeng
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