ECFS Guidelines

Updated September 2012

Note: When filtering by "Guideline Type" please note that the options prefixed as "EuroCareCF: Workpackage" refer to "EuroCareCF: Consensus guidelines and reports (European Coordination Action for Research in Cystic Fibrosis)".

June 2011

Title: Developing new products in cystic fibrosis: Needs and obstacles for activities of small and middle-sized companies
References
Journal of Cystic Fibrosis Volume 10 (2011) S103-S109
Keywords
products, product development, needs, obstacles, companies, SME, drugs, clinical trials, patient registry, grants, funding, collaboration
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Title: Medical needs of cystic fibrosis patients and policies for fair co-operation between small and middle-sized companies and patient organizations
References
Journal of Cystic Fibrosis Volume 10 (2011) S110-S113
Keywords
medical needs, policies, policy, SME, patient organizations, patient organisations, EuroCareCF, PO, cooperation, collaboration, clinical trials, post-marketing authorization, authorisation
PDF icon Available as a free download here
Title: Recommendations for the classification of diseases as CFTR-related disorders
References
Journal of Cystic Fibrosis Volume 10 (2011) S86-S102
Keywords
recommendations, classification of diseases, CFTR-related disorders, CFTR, genetically related, Cystic fibrosis transmembrane conductance regulator, CFTR-RD
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Title: Measuring health-related quality of life in clinical trials in cystic fibrosis
References
Journal of Cystic Fibrosis Volume 10 (2011) S82-S85
Keywords
health-related quality of life, Quality of life, clinical trials, HRQoL, outcome measure, HRQoL Outcomes Group
PDF icon Available as a free download here
Title: Chronic Pseudomonas aeruginosa infection definition: EuroCareCF Working Group report
References
Journal of Cystic Fibrosis Volume 10 (2011) S75-S78
Keywords
chronic Pseudomonas aeruginosa infection, EuroCareCF, chronic pulmonary infection, P. aeruginosa, morbidity, mortality, mucoid variants
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Title: Pulmonary exacerbation: Towards a definition for use in clinical trials. Report from the EuroCareCF Working Group on outcome parameters in clinical trials
References
Journal of Cystic Fibrosis Volume 10 (2011) S79-S81
Keywords
Pulmonary exacerbation, clinical trials, EuroCareCF, outcome parameters, intravenous antibiotics, oral antibiotics, nebulised therapy
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Title: Guideline on the design and conduct of cystic fibrosis clinical trials: The European Cystic Fibrosis Society–Clinical Trials Network (ECFS-CTN)
References
Journal of Cystic Fibrosis Volume 10 (2011) S67-S74
Keywords
design, conduct, clinical trials, ECFS-CTN, CTN, clinical trials network, disease specific research networks
PDF icon Available as a free download here
Title: New clinical diagnostic procedures for cystic fibrosis in Europe
References
Journal of Cystic Fibrosis Volume 10 (2011) S53-S66
Keywords
clinical diagnostic procedures, Europe, CFTR bioassays, nasal epithelium, Nasal potential difference measurements
PDF icon Available as a free download here
Title: Guiding principles on how to manage relevant psychological aspects within a CF team: Interdisciplinary approaches
References
Journal of Cystic Fibrosis Volume 10 (2011) S45-S52
Keywords
guiding principles, pschological aspects, interdisciplinary
PDF icon Available as a free download here
Title: End of Life Care for Patients with Cystic Fibrosis
References
Journal of Cystic Fibrosis Volume 10 (2011) S37-S44
Keywords
end of life, Palliative care, Quality of life, care planning
PDF icon Available as a free download here
Title: Best practice guidance for the diagnosis and management of cystic fibrosis-associated liver disease
References
Journal of Cystic Fibrosis Volume 10 (2011) S29-S36
Keywords
best practice, Diagnosis, Management, liver disease, multilobular cirrhosis, portal hypertension, variceal bleeding
PDF icon Available as a free download here
Title: Guidelines for the diagnosis and management of distal intestinal obstruction syndrome in cystic fibrosis patients
References
Journal of Cystic Fibrosis Volume 10 (2011) S24-S28
Keywords
Diagnosis, Distal intestinal obstruction syndrome, DIOS, viscid faecal material, terminal ileum, proximal colon
PDF icon Available as a free download here
Title: European cystic fibrosis bone mineralisation guidelines
References
Journal of Cystic Fibrosis Volume 10 (2011) S16-S23
Keywords
Bone, mineralisation, bone mineralisation, BMD, bone mineral density, Epidemiology, pathophysiology, skeletal deficits
PDF icon Available as a free download here
Title: The implementation of standards of care in Europe: State of the art
References
Journal of Cystic Fibrosis Volume 10 (2011) S7-S15
Keywords
standards of care
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