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Standardised clinical data from patients with primary ciliary dyskinesia: FOLLOW-PCD

Research output: Contribution to journalJournal articleResearchpeer-review

Harvard

Goutaki, M, Papon, J-F, Boon, M, Casaulta, C, Eber, E, Escudier, E, Halbeisen, FS, Harris, A, Hogg, C, Honore, I, Jung, A, Karadag, B, Koerner-Rettberg, C, Legendre, M, Maitre, B, Nielsen, KG, Rubbo, B, Rumman, N, Schofield, L, Shoemark, A, Thouvenin, G, Willkins, H, Lucas, JS & Kuehni, CE 2020, 'Standardised clinical data from patients with primary ciliary dyskinesia: FOLLOW-PCD', ERJ Open Research, vol. 6, no. 1, pp. 00237-2019. https://doi.org/10.1183/23120541.00237-2019

APA

Goutaki, M., Papon, J-F., Boon, M., Casaulta, C., Eber, E., Escudier, E., Halbeisen, F. S., Harris, A., Hogg, C., Honore, I., Jung, A., Karadag, B., Koerner-Rettberg, C., Legendre, M., Maitre, B., Nielsen, K. G., Rubbo, B., Rumman, N., Schofield, L., ... Kuehni, C. E. (2020). Standardised clinical data from patients with primary ciliary dyskinesia: FOLLOW-PCD. ERJ Open Research, 6(1), 00237-2019. https://doi.org/10.1183/23120541.00237-2019

CBE

Goutaki M, Papon J-F, Boon M, Casaulta C, Eber E, Escudier E, Halbeisen FS, Harris A, Hogg C, Honore I, Jung A, Karadag B, Koerner-Rettberg C, Legendre M, Maitre B, Nielsen KG, Rubbo B, Rumman N, Schofield L, Shoemark A, Thouvenin G, Willkins H, Lucas JS, Kuehni CE. 2020. Standardised clinical data from patients with primary ciliary dyskinesia: FOLLOW-PCD. ERJ Open Research. 6(1): 00237-2019. https://doi.org/10.1183/23120541.00237-2019

MLA

Vancouver

Goutaki M, Papon J-F, Boon M, Casaulta C, Eber E, Escudier E et al. Standardised clinical data from patients with primary ciliary dyskinesia: FOLLOW-PCD. ERJ Open Research. 2020 Jan;6(1): 00237-2019. https://doi.org/10.1183/23120541.00237-2019

Author

Goutaki, Myrofora ; Papon, Jean-François ; Boon, Mieke ; Casaulta, Carmen ; Eber, Ernst ; Escudier, Estelle ; Halbeisen, Florian S ; Harris, Amanda ; Hogg, Claire ; Honore, Isabelle ; Jung, Andreas ; Karadag, Bulent ; Koerner-Rettberg, Cordula ; Legendre, Marie ; Maitre, Bernard ; Nielsen, Kim G ; Rubbo, Bruna ; Rumman, Nisreen ; Schofield, Lynne ; Shoemark, Amelia ; Thouvenin, Guillaume ; Willkins, Hannah ; Lucas, Jane S ; Kuehni, Claudia E. / Standardised clinical data from patients with primary ciliary dyskinesia : FOLLOW-PCD. In: ERJ Open Research. 2020 ; Vol. 6, No. 1. pp. 00237-2019.

Bibtex

@article{96151697c8ba4cb5a14b9250eec77665,
title = "Standardised clinical data from patients with primary ciliary dyskinesia: FOLLOW-PCD",
abstract = "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 via the Better Experimental Approaches to Treat PCD (BEAT-PCD) COST Action network and a literature review. We selected and revised the content items with the working group and patient representatives. We then revised several drafts in an adapted Delphi process, refining the content and structure. FOLLOW-PCD has a modular structure, to allow flexible use based on local practice and research focus. It includes patient-completed versions for the modules on symptoms and lifestyle. The form allows a comprehensive standardised clinical assessment at baseline and for annual reviews and a short documentation for routine follow-up. It can either be completed using printable paper forms or using an online REDCap database. Data collected in FOLLOW-PCD version 1.0 is available in real-time for national and international monitoring and research. The form will be adapted in the future after extensive piloting in different settings and we encourage the translation of the patient questionnaires to multiple languages. FOLLOW-PCD will facilitate quality research based on prospective standardised data from routine care, which can be pooled between centres, to provide first-line and real-time evidence for clinical decision-making.",
author = "Myrofora Goutaki and Jean-Fran{\c c}ois Papon and Mieke Boon and Carmen Casaulta and Ernst Eber and Estelle Escudier and Halbeisen, {Florian S} and Amanda Harris and Claire Hogg and Isabelle Honore and Andreas Jung and Bulent Karadag and Cordula Koerner-Rettberg and Marie Legendre and Bernard Maitre and Nielsen, {Kim G} and Bruna Rubbo and Nisreen Rumman and Lynne Schofield and Amelia Shoemark and Guillaume Thouvenin and Hannah Willkins and Lucas, {Jane S} and Kuehni, {Claudia E}",
note = "Copyright {\textcopyright}ERS 2020.",
year = "2020",
month = jan,
doi = "10.1183/23120541.00237-2019",
language = "English",
volume = "6",
pages = " 00237--2019",
journal = "BMJ Open",
issn = "2044-6055",
publisher = "BMJ Publishing Group Ltd",
number = "1",

}

RIS

TY - JOUR

T1 - Standardised clinical data from patients with primary ciliary dyskinesia

T2 - FOLLOW-PCD

AU - Goutaki, Myrofora

AU - Papon, Jean-François

AU - Boon, Mieke

AU - Casaulta, Carmen

AU - Eber, Ernst

AU - Escudier, Estelle

AU - Halbeisen, Florian S

AU - Harris, Amanda

AU - Hogg, Claire

AU - Honore, Isabelle

AU - Jung, Andreas

AU - Karadag, Bulent

AU - Koerner-Rettberg, Cordula

AU - Legendre, Marie

AU - Maitre, Bernard

AU - Nielsen, Kim G

AU - Rubbo, Bruna

AU - Rumman, Nisreen

AU - Schofield, Lynne

AU - Shoemark, Amelia

AU - Thouvenin, Guillaume

AU - Willkins, Hannah

AU - Lucas, Jane S

AU - Kuehni, Claudia E

N1 - Copyright ©ERS 2020.

PY - 2020/1

Y1 - 2020/1

N2 - 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 via the Better Experimental Approaches to Treat PCD (BEAT-PCD) COST Action network and a literature review. We selected and revised the content items with the working group and patient representatives. We then revised several drafts in an adapted Delphi process, refining the content and structure. FOLLOW-PCD has a modular structure, to allow flexible use based on local practice and research focus. It includes patient-completed versions for the modules on symptoms and lifestyle. The form allows a comprehensive standardised clinical assessment at baseline and for annual reviews and a short documentation for routine follow-up. It can either be completed using printable paper forms or using an online REDCap database. Data collected in FOLLOW-PCD version 1.0 is available in real-time for national and international monitoring and research. The form will be adapted in the future after extensive piloting in different settings and we encourage the translation of the patient questionnaires to multiple languages. FOLLOW-PCD will facilitate quality research based on prospective standardised data from routine care, which can be pooled between centres, to provide first-line and real-time evidence for clinical decision-making.

AB - 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 via the Better Experimental Approaches to Treat PCD (BEAT-PCD) COST Action network and a literature review. We selected and revised the content items with the working group and patient representatives. We then revised several drafts in an adapted Delphi process, refining the content and structure. FOLLOW-PCD has a modular structure, to allow flexible use based on local practice and research focus. It includes patient-completed versions for the modules on symptoms and lifestyle. The form allows a comprehensive standardised clinical assessment at baseline and for annual reviews and a short documentation for routine follow-up. It can either be completed using printable paper forms or using an online REDCap database. Data collected in FOLLOW-PCD version 1.0 is available in real-time for national and international monitoring and research. The form will be adapted in the future after extensive piloting in different settings and we encourage the translation of the patient questionnaires to multiple languages. FOLLOW-PCD will facilitate quality research based on prospective standardised data from routine care, which can be pooled between centres, to provide first-line and real-time evidence for clinical decision-making.

U2 - 10.1183/23120541.00237-2019

DO - 10.1183/23120541.00237-2019

M3 - Journal article

C2 - 32055632

VL - 6

SP - 237

EP - 2019

JO - BMJ Open

JF - BMJ Open

SN - 2044-6055

IS - 1

ER -

ID: 62067402