Extract
We read the editorial entitled “The time is right for an international primary ciliary dyskinesia disease registry” with interest [1]. In it, Haver [1] discussed our recent article on the International Primary Ciliary Dyskinesia Cohort (iPCD Cohort) [2] and stressed three aims important to primary ciliary dyskinesia (PCD) research: the development of a prospective international PCD registry, the standardisation of data collection and the achievement of an international diagnostic consensus. We support these aims and here highlight ongoing activities that support them.
Abstract
It is important to use all available data for PCD research while we strengthen efforts to reach diagnostic consensus http://ow.ly/N7SP30btbVY
Acknowledgements
We want to thank all the patients in the iPCD Cohort and their families, and we are grateful to the PCD patient organisations who collaborated closely with us. We thank all the researchers who collaborate with us in the iPCD Cohort and other BEAT-PCD projects. We also thank Christopher Owen Ritter from the Institute of Social and Preventive Medicine at the University of Bern, Bern, Switzerland, for his editorial suggestions.
Footnotes
Support statement: The development of the iPCD Cohort has been funded from the European Union’s Seventh Framework Programme under EG-GA No.35404 BESTCILIA: Better Experimental Screening and Treatment for Primary Ciliary Dyskinesia. Primary Ciliary Dyskinesia research at the Institute of Social and Preventive Medicine, Bern, is supported by a Swiss National Science Foundation grant (320030_173044) and national funding from the Lung Leagues of Bern, St Gallen, Vaud, Ticino and Valais, and the Milena-Pro Kartagener Foundation. The researchers participate in the network COST Action BEAT-PCD: Better Evidence to Advance Therapeutic options for PCD (BM 1407). Funding information for this article has been deposited with the Crossref Funder Registry.
Conflict of interest: None declared.
- Received February 20, 2017.
- Accepted March 5, 2017.
- Copyright ©ERS 2017