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


Goutaki M., Papon J., Boon M., Casaulta C., Eber E., Escudier E., ...More

ERJ OPEN RESEARCH, vol.6, no.1, 2020 (Journal Indexed in ESCI) identifier

  • Publication Type: Article / Article
  • Volume: 6 Issue: 1
  • Publication Date: 2020
  • Doi Number: 10.1183/23120541.00237-2019
  • Title of Journal : ERJ OPEN RESEARCH

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.