Lessons from the on-site quality audit of data transmitted to the French cystic fibrosis registry-Reference-Cited by-同舟云学术

Lessons from the on-site quality audit of data transmitted to the French cystic fibrosis registry

Published:2018-02 Issue:S1 Volume:13 Page:
ISSN:1750-1172
Container-title:Orphanet Journal of Rare Diseases
language:en
Short-container-title:Orphanet J Rare Dis

Author:

Pellen Nadine,Guéganton Laëtitia,Pougheon Bertrand Dominique,Rault Gilles

Publisher

Springer Science and Business Media LLC

Subject

Pharmacology (medical),Genetics (clinical),General Medicine

Link

http://link.springer.com/content/pdf/10.1186/s13023-017-0750-x.pdf

Reference14 articles.

1. Rault G. Vers un rapprochement des registres et observatoires de la mucoviscidose (towards a reconciliation of CF registries and observatories). Référence Mucoviscidose. 1998;3:9–14.

2. Notification of CNIL authorization issued in March 2007 turning the French National Cystic Fibrosis Observatory (ONM) into the French Cystic Fibrosis Registry (RFM). Available on demand. www.grosfichiers.com/IULk8gEIkly3v

3. Burgel PR, et al. Future trends in cystic fibrosis demography in 34 European countries. Eur Respir J. 2015;46:133–41.

4. French Cystic Fibrosis Annual Report available at: http://www.vaincrelamuco.org/sites/default/files/french_cf_registryannual_data_report_2013.pdf . Accessed 15 Dec 2017.

5. Pougheon Bertrand D, et al. PHARE-M performance protocol. Quality of care in cystic fibrosis: assessment protocol. OJRD Supplement. 2017.

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