Standardised clinical data from patients with primary ciliary dyskinesia: FOLLOW-PCD.
Journal
ERJ open research
ISSN: 2312-0541
Titre abrégé: ERJ Open Res
Pays: England
ID NLM: 101671641
Informations de publication
Date de publication:
Jan 2020
Jan 2020
Historique:
received:
06
09
2019
accepted:
12
12
2019
entrez:
15
2
2020
pubmed:
15
2
2020
medline:
15
2
2020
Statut:
epublish
Résumé
Clinical data on primary ciliary dyskinesia (PCD) are limited, heterogeneous and mostly derived from retrospective chart reviews, leading to missing data and unreliable symptoms and results of physical examinations. We need standardised prospective data collection to study phenotypes, severity and prognosis and improve standards of care. A large, international and multidisciplinary group of PCD experts developed FOLLOW-PCD, a standardised clinical PCD form and patient questionnaire. We identified existing forms for clinical data collection
Identifiants
pubmed: 32055632
doi: 10.1183/23120541.00237-2019
pii: 00237-2019
pmc: PMC7008138
pii:
doi:
Types de publication
Journal Article
Langues
eng
Subventions
Organisme : Department of Health
ID : NIHR300367
Pays : United Kingdom
Informations de copyright
Copyright ©ERS 2020.
Déclaration de conflit d'intérêts
Conflict of interest: M. Goutaki has nothing to disclose. Conflict of interest: J-F. Papon has nothing to disclose. Conflict of interest: M. Boon reports COST BEAT-PCD Action (BM 1407) during the conduct of the study, and Postdoc KOOR funding from the University Hospital Leuven and MyCyFAPP Horizon 2020 EU funding outside the submitted work. Conflict of interest: C. Casaulta has nothing to disclose. Conflict of interest: E. Eber has nothing to disclose. Conflict of interest: E. Escudier has nothing to disclose. Conflict of interest: F.S. Halbeisen has nothing to disclose. Conflict of interest: A. Harris has nothing to disclose. Conflict of interest: C. Hogg has nothing to disclose. Conflict of interest: I. Honore has nothing to disclose. Conflict of interest: A. Jung has nothing to disclose. Conflict of interest: B. Karadag has nothing to disclose. Conflict of interest: C. Koerner-Rettberg has nothing to disclose. Conflict of interest: M. Legendre has nothing to disclose. Conflict of interest: B. Maitre has nothing to disclose. Conflict of interest: K.G. Nielsen has nothing to disclose. Conflict of interest: B. Rubbo has nothing to disclose. Conflict of interest: N. Rumman has nothing to disclose. Conflict of interest: L. Schofield has nothing to disclose. Conflict of interest: A. Shoemark has nothing to disclose. Conflict of interest: G. Thouvenin has nothing to disclose. Conflict of interest: H. Wilkins has nothing to disclose. Conflict of interest: J.S. Lucas reports COST Action BM1407 BEAT-PCD during the conduct of the study. Conflict of interest: C.E. Kuehni has nothing to disclose.
Références
J Cyst Fibros. 2016 May;15(3):302-8
pubmed: 27118577
BMC Proc. 2016 Nov 29;10(Suppl 9):66
pubmed: 28813544
Eur Respir J. 2017 Jan 4;49(1):
pubmed: 28052956
Thorax. 2017 Sep;72(9):832-839
pubmed: 28246220
Prim Care Respir J. 2009 Sep;18(3):208-15
pubmed: 19690787
Ann Am Thorac Soc. 2016 Oct;13(10):1726-1735
pubmed: 27464304
Int J Epidemiol. 2018 Feb 1;47(1):9-10e
pubmed: 29040601
Eur Respir J. 2018 Aug 23;52(2):
pubmed: 30049738
BMC Proc. 2018 Dec 18;12(Suppl 16):64
pubmed: 30807620
J Cyst Fibros. 2018 May;17(3):297-305
pubmed: 29275954
Int J Environ Res Public Health. 2018 Aug 03;15(8):
pubmed: 30081484
Eur Respir J. 2010 Dec;36(6):1248-58
pubmed: 20530032
Eur Respir J. 2016 Mar;47(3):849-59
pubmed: 26659107
BMC Proc. 2018 Mar 5;12(Suppl 2):1
pubmed: 29630684
J Biomed Inform. 2009 Apr;42(2):377-81
pubmed: 18929686
BMC Pediatr. 2016 Apr 29;16:59
pubmed: 27130217
West J Nurs Res. 2018 May;40(5):753-766
pubmed: 28322657
ERJ Open Res. 2019 May 10;5(2):
pubmed: 31111042
Intern Med J. 2017 Sep;47(9):1075-1079
pubmed: 28891182
Eur Respir J. 2017 Dec 21;50(6):
pubmed: 29269581
Eur Respir J. 2015 Aug;46(2):375-83
pubmed: 25976687
Eur Respir J. 2009 Dec;34(6):1264-76
pubmed: 19948909
Swiss Med Wkly. 2019 Jan 13;149:
pubmed: 30691261
Pediatr Pulmonol. 2019 Dec;54(12):2011-2020
pubmed: 31475479
Eur Respir J. 2016 Oct;48(4):1081-1095
pubmed: 27492829
Paediatr Respir Rev. 2014 Jun;15(2):142-5
pubmed: 23764568
Eur Respir J. 2012 Jun;39(6):1482-91
pubmed: 22282549