ECFS Guidelines on Issues Associated with Cystic Fibrosis

updated September 2012

EuroCareCF: Consensus guidelines and reports (European Coordination Action for Research in Cystic Fibrosis)

Workpackage 1 - Optimising Patient Care & CF Team Work 

The implementation of standards of care in Europe: State of the art
Journal of Cystic Fibrosis Volume 10 (2011) S7-S15
Available as a free download here (pdf)

European cystic fibrosis bone mineralisation guidelines
Journal of Cystic Fibrosis Volume 10 (2011) S16-S23
Available as a free download here (pdf)

Guidelines for the diagnosis and management of distal intestinal obstruction syndrome in cystic fibrosis patients
Journal of Cystic Fibrosis Volume 10 (2011) S24-S28
Available as a free download here (pdf)

Best practice guidance for the diagnosis and management of cystic fibrosis-associated liver disease
Journal of Cystic Fibrosis Volume 10 (2011) S29-S36
Available as a free download here (pdf)

End of Life Care for Patients with Cystic Fibrosis
Journal of Cystic Fibrosis Volume 10 (2011) S37-S44
Available as a free download here (pdf)

Guiding principles on how to manage relevant psychological aspects within a CF team: Interdisciplinary approaches
Journal of Cystic Fibrosis Volume 10 (2011) S45-S52
Available as a free download here (pdf)

Workpackage 3 - Coordination of Clinical Research

New clinical diagnostic procedures for cystic fibrosis in Europe
Journal of Cystic Fibrosis Volume 10 (2011) S53-S66
Available as a free download here (pdf)

Guideline on the design and conduct of cystic fibrosis clinical trials: The European Cystic Fibrosis Society–Clinical Trials Network (ECFS-CTN)
Journal of Cystic Fibrosis Volume 10 (2011) S67-S74
Available as a free download here (pdf)

Chronic Pseudomonas aeruginosa infection definition: EuroCareCF Working Group report
Journal of Cystic Fibrosis Volume 10 (2011) S75-S78
Available as a free download here (pdf)

Pulmonary exacerbation: Towards a definition for use in clinical trials. Report from the EuroCareCF Working Group on outcome parameters in clinical trials
Journal of Cystic Fibrosis Volume 10 (2011) S79-S81
Available as a free download here (pdf)

Measuring health-related quality of life in clinical trials in cystic fibrosis
Journal of Cystic Fibrosis Volume 10 (2011) S82-S85
Available as a free download here (pdf)

Recommendations for the classification of diseases as CFTR-related disorders
Journal of Cystic Fibrosis Volume 10 (2011) S86-S102
Available as a free download here (pdf)

Workpackage 4 - Small and Medium-Sized Enterprises (SMEs) Group

Developing new products in cystic fibrosis: Needs and obstacles for activities of small and middle-sized companies
Journal of Cystic Fibrosis Volume 10 (2011) S103-S109
Available as a free download here (pdf) 

Medical needs of cystic fibrosis patients and policies for fair co-operation between small and middle-sized companies and patient organizations
Journal of Cystic Fibrosis Volume 10 (2011) S110-S113
Available as a free download here (pdf)

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Other Guidelines 

Travelling with cystic fibrosis: Recommendations for patients and care Team members
Journal of Cystic Fibrosis Volume 9 (2010) 385-399
Available as a free download here (pdf)

European best practice guidelines for cystic fibrosis neonatal screening
Journal of Cystic Fibrosis Volume 8 (2009) 153-173 
Available as a free download here (pdf)

Guidelines for the management of pregnancy in women with cystic fibrosis
Journal of Cystic Fibrosis Volume 7, Supplement 1, Pages S1-S32 (January 2008)
Available as a free download here (pdf)