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
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
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
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
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
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
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
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
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
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
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
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
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
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
September 2010
Title: Travelling with cystic fibrosis: Recommendations for patients and care Team members
References Journal of Cystic Fibrosis Volume 9 (2010) 385-399
Keywords travelling, travel, trip, destination, recommendations, European Guidelines, ECORN-CF, Executive Agency of Health and Consumers of the European Union, Christiane Herzog Foundation, immunocompromised, vaccination, medication, emergency
May 2009
Title: European best practice guidelines for cystic fibrosis neonatal screening
References Journal of Cystic Fibrosis Volume 8 (2009) 153-173
Keywords European, best practice, neonatal screening, NBS, IRT, DNA mutation analysis, sweat chloride, phenotypes, infant
January 2008
Title: Guidelines for the management of pregnancy in women with cystic fibrosis
References Journal of Cystic Fibrosis Volume 7, Supplement 1, Pages S1-S32 (January 2008)
Keywords pregnancy, women, reproductive, baby, transplantation, preconceptual, physiology, conception, breast feeding, paediatrician, physiotherapist, dietician, pharmacist, psychologist
