RT Journal Article
SR Electronic
T1 Standardised clinical data from patients with primary ciliary dyskinesia: FOLLOW-PCD
JF ERJ Open Research
JO erjor
FD European Respiratory Society
SP 00237-2019
DO 10.1183/23120541.00237-2019
VO 6
IS 1
A1 Myrofora Goutaki
A1 Jean-François Papon
A1 Mieke Boon
A1 Carmen Casaulta
A1 Ernst Eber
A1 Estelle Escudier
A1 Florian S. Halbeisen
A1 Amanda Harris
A1 Claire Hogg
A1 Isabelle Honore
A1 Andreas Jung
A1 Bulent Karadag
A1 Cordula Koerner-Rettberg
A1 Marie Legendre
A1 Bernard Maitre
A1 Kim G. Nielsen
A1 Bruna Rubbo
A1 Nisreen Rumman
A1 Lynne Schofield
A1 Amelia Shoemark
A1 Guillaume Thouvenin
A1 Hannah Willkins
A1 Jane S. Lucas
A1 Claudia E. Kuehni
A1 ,
YR 2020
UL http://openres.ersjournals.com/content/6/1/00237-2019.abstract
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.Standardised follow-up of PCD patients enables quality research with real-time data from routine care, providing evidence for clinical decision-making http://bit.ly/2PDfISF