November 2015
Title: Cystic Fibrosis Screen Positive, Inconclusive Diagnosis (CFSPID): a new designation and management recommendations for infants with an inconclusive diagnosis following newborn screening
References Journal of Cystic Fibrosis. 2015 Nov;14(6):706-713
Keywords cystic fibrosis screen positive inconclusive diagnosis, CFSPID, screen positive, inconclusive diagnosis, designation, Management, recommendation, infant, Newborn screening
Theme Diagnosis/Screening
Title: A Longitudinal Analysis of Chronic MRSA and Pseudomonas aeruginosa Co-infection in Cystic Fibrosis: A Single-Center Study
Authors Maret L. Maliniaka, Arlene A. Stecenkoa, Nael A. McCarty
References J Cyst Fibros. 2015 Nov 20. pii: S1569-1993(15)00258-1
Keywords Methicillin-resistant Staphylococcus aureus, Pseudomonas aeruginosa, Pulmonary function tests, Longitudinal studies, Epidemiology
October 2015
Title: Baseline Ultrasound and Clinical Correlates in Children with Cystic Fibrosis
Authors Leung DH, Ye W, Molleston JP, Weymann A, Ling S, Paranjape SM, Romero R, Schwarzenberg SJ, Palermo J, Alonso EM, Murray KF, Marshall BC, Sherker AH, Siegel MJ, Krishnamurthy R, Harned R, Karmazyn B, Magee JC, Narkewicz MR; Cystic Fibrosis Liver Disease Ne
References J Pediatr. 2015 Oct;167(4):862-868.e2. doi: 10.1016/j.jpeds.2015.06.062.
October 2015
Title: Statement on Exercise Testing in Cystic Fibrosis
Authors Hebestreit H, et al.
References Respiration. 2015;90:332-351
Keywords statement, Exercise testing
Theme Physiotherapy/Exercise testing
Title: International Committee on Mental Health in Cystic Fibrosis: Cystic Fibrosis Foundation and European Cystic Fibrosis Society consensus statements for screening and treating depression and anxiety
Authors Alexandra L Quittner, Janice Abbott, Anna M Georgiopoulos, Lutz Goldbeck, Beth Smith, Sarah E Hempstead, Bruce Marshall, Kathryn A Sabadosa, Stuart Elborn, The International Committee on Mental Health Thorax
References doi:10.1136/thoraxjnl-2015-207488
Keywords mental health, screening, depression, anxiety
September 2015
Title: Genome-wide association meta-analysis identifies five modifier loci of lung disease severity in cystic fibrosis
Authors Corvol H, Blackman SM, Boëlle PY, Gallins PJ, Pace RG, Stonebraker JR, Accurso FJ, Clement A, Collaco JM, Dang H, Dang AT, Franca A, Gong J, Guillot L, Keenan K, Li W, Lin F, Patrone MV, Raraigh KS, Sun L, Zhou YH, O'Neal WK, Sontag MK, Levy H, Durie PR,
References Nat Commun. 2015 Sep 29;6:8382. doi: 10.1038/ncomms9382.
September 2015
Title: Outcomes and Treatment of Chronic Methicillin-Resistant Staphylococcus aureus Differs by Staphylococcal Cassette Chromosome mec (SCCmec) Type in Children With Cystic Fibrosis
Authors Heltshe SL, Saiman L, Popowitch EB, Miller MB, Kloster M, Thompson V, Ferkol TW, Hoover WC, Schechter MS, Muhlebach MS.
References J Pediatric Infect Dis Soc. 2015 Sep;4(3):225-31. doi: 10.1093/jpids/piu048. Epub 2014 Jun 9.
Keywords PVL, Panton-Valentine leukocidin, SCCmec type, methicillin-resistant Staphylococcus aureus; pulmonary exacerbation
August 2015
Title: Rate of Uptake of Ivacaftor Use after U.S. Food and Drug Administration Approval among Patients Enrolled in the U.S. Cystic Fibrosis Foundation Patient Registry
Authors Sawicki GS, Dasenbrook E, Fink AK, Schechter MS
References Ann Am Thorac Soc. 2015 Aug;12(8):1146-52. doi: 10.1513/AnnalsATS.201504-214OC
Keywords Ivacaftor, patient registry
June 2015
Title: Multicenter Observational Study on Factors and Outcomes Associated with Various Methicillin-Resistant Staphylococcus aureus Types in Children with Cystic Fibrosis
Authors Muhlebach MS, Heltshe SL, Popowitch EB, Miller MB, Thompson V, Kloster M, Ferkol T, Hoover WC, Schechter MS, Saiman L; STAR-CF Study Team
References Ann Am Thorac Soc. 2015 Jun;12(6):864-71.
Keywords Panton–Valentine leukocidin, SCCmec type, clinic visits, Methicillin-resistant Staphylococcus aureus, risk factor
May 2015
Title: Fine particulate matter exposure and initial Pseudomonas aeruginosa acquisition in cystic fibrosis.
Authors Psoter KJ, De Roos AJ, Mayer JD, Kaufman JD, Wakefield J, Rosenfeld M.
References Ann Am Thorac Soc. 2015 Mar;12(3):385-91. doi: 10.1513/AnnalsATS
Keywords Pseudomonas aeruginosa, ambient air pollution, Epidemiology, Fine particulate matter
Title: Effect of treatment of cystic fibrosis pulmonary exacerbations on systemic inflammation.
Authors Sagel SD, Thompson V, Chmiel JF, Montgomery GS, Nasr SZ, Perkett E, Saavedra MT, Slovis B, Anthony MM, Emmett P, Heltshe SL.
References Ann Am Thorac Soc. 2015 May;12(5):708-17
Keywords Biomarker, Plasma, Pulmonary exacerbation
May 2015
Title: Outcomes of infants with indeterminate diagnosis detected by cystic fibrosis newborn screening.
Authors Ren CL, Fink AK, Petren K, Borowitz DS, McColley SA, Sanders DB, Rosenfeld M, Marshall BC.
References Pediatrics. 2015 Jun;135(6):e1386-92. doi: 10.1542/peds.2014-3698. Epub 2015 May 11.
March 2015
Title: Comparison of WHO and CDC growth charts in predicting pulmonary outcomes in cystic fibrosis
Authors Machogu E, Cao Y, Miller T, Simpson P, Levy H, Quintero D, Goday PS.
References J Pediatr Gastroenterol Nutr. 2015 Mar;60(3):378-83. doi: 10.1097/MPG.0000000000000610.
January 2015
Title: Characterization of Missing Data in Clinical Registry Studies.
Authors Mendelsohn AB, Dreyer NA, Mattox PW, Su Z, Swenson A, Li R, Turner JR, Velentgas P.
References Ther Innov Regul Sci. 2015 Jan;49(1):146-154. doi: 10.1177/2168479014532259.
Keywords missing data, missingness, observational, registry, research, studies
December 2014
Title: Gender Differences in Outcomes of Patients with Cystic Fibrosis
Authors Harness-Brumley CL, Elliott AC, Rosenbluth DB, Raghavan D, Jain R.
References J Womens Health (Larchmt). 2014 Dec;23(12):1012-20. doi: 10.1089/jwh.2014.4985.
December 2014
Title: Improvements in lung function and height among cohorts of 6-year-olds with cystic fibrosis from 1994 to 2012
Authors VanDevanter DR, Pasta DJ, Konstan MW.
References J Pediatr. 2014 Dec;165(6):1091-1097.e2. doi: 10.1016/j.jpeds.2014.06.061
December 2014
Title: CFF pulmonary guideline. Pharmacologic approaches to prevention and eradication of initial Pseudomonas aeruginosa infection
Authors Mogayzel PJ, et al.
References Annals of the American Thoracic Society. 2014; 11(10):1640-1650
Keywords CFF, Pulmonary, guideline, pharmacologic, prevention, eradication, pseudonomas aeruginosa, Infection
Theme Lung Disease and Infection
November 2014
Title: Aspergillus and cystic fibrosis: old disease – new classifications
Authors Felton IC, Simmonds J
References Current Opinion in Pulmonary Medicine. 2014; 20:632-638
Keywords Aspergillus, disease, classification
Theme Lung Disease and Infection
September 2014
Title: Management of cystic fibrosis-related diabetes in children and adolescents ISAPD Clinical Practice Consensus Guidelines 2014 Compendium)
References Pediatric Diabetes. 2014: 15 (Suppl.20): 65-76
Keywords Management, cf-related, Diabetes, Child, Children, Adolescent, ISPAD, ISPAD Clinical Practice Consensus Guidelines, compendium
August 2014
Title: Infection prevention and control guideline for cystic fibrosis: 2013 update.
References Infection Control and Hospital Epidemilogy
Keywords infection prevention, infection control, guideline
Theme Lung Disease and Infection
June 2014
Title: Differential geographical risk of initial Pseudomonas aeruginosa acquisition in young U.S. children with cystic fibrosis.
Authors Psoter KJ, Rosenfeld M, De Roos AJ, Mayer JD, Wakefield J.
References Am J Epidemiol. 2014 Jun 15;179(12):1503-13. doi: 10.1093/aje/kwu077.
Keywords Bayesian hierarchical spatial models, Pseudomonas aeruginosa, Weibull regression, interval censoring, intrinsic conditional autoregression
May 2014
Title: Vitamin A supplementation for cystic fibrosis
Authors Bonifant CM, et al.
References Bonifant CM, Shevill E, Chang AB. Vitamin A supplementation for cystic fibrosis. Cochrane Database of Systematic Reviews 2014, Issue 5. Art. No.: CD006751. DOI: 10.1002/14651858.CD006751.pub4
Keywords vitamin A, pancreatic insufficiency, fat soluble vitamin deficiency, vitamin deficiency, deficiency, co-absorbed, fat, supplement, eye, skin, respiratory, skeletal, Child
Theme Nutrition/Gastroenterology
Title: Vitamin D supplementation
Authors Ferguson JH, Chang AB
References Ferguson JH, Chang AB. Vitamin D supplementation for cystic fibrosis. Cochrane Database of Systematic Reviews 2014, Issue 5. Art. No.: CD007298. DOI: 10.1002/14651858.CD007298.pub4
Keywords Vitamin D, pancreatic insufficiency malabsorption, fat soluble vitamin, calcium homeostasis, bone mineralisation, extraskeletal effect, supplementation
Theme Nutrition/Gastroenterology
Title: European Cystic Fibrosis Society Standards of Care: Quality Management in cystic fibrosis
References Journal of Cystic Fibrosis. 2014 May;13 Suppl 1:S43-S59
Keywords standards of care, quality management
Theme Care of patients with CF, Clinical Trials, Pregnancy with CF
Title: European Cystic Fibrosis Society Standards of Care: Best Practice guidelines
References Journal of Cystic Fibrosis. 2014 May;13 Suppl 1:S23-S42
Theme Care of patients with CF, Clinical Trials, Pregnancy with CF
Title: European Cystic Fibrosis Society Standards of Care: Framework for the Cystic Fibrosis Centre
References Journal of Cystic Fibrosis. 2014 May;13 Suppl 1:S3-S22
Keywords standards of care, framework, Cystic Fibrosis Centre, CFC
Theme Care of patients with CF, Clinical Trials, Pregnancy with CF
March 2014
Title: Antimicrobial susceptibility and molecular typing of MRSA in cystic fibrosis.
Authors Champion EA, Miller MB, Popowitch EB, Hobbs MM, Saiman L, Muhlebach MS; STAR-CF Study Team.
References Pediatr Pulmonol. 2014 Mar;49(3):230-7. doi: 10.1002/ppul.22815
Keywords Panton-Valentine leukocidin, community MRSA, hospital MRSA, multi-center study, spa-typing; staphylococcal cassette chromosome mec
March 2014
Title: Modeling the impact of antibiotic exposure on human microbiota
Authors Zhao J, Murray S, Lipuma JJ.
References Sci Rep. 2014 Mar 11;4:4345. doi: 10.1038/srep04345
March 2014
Title: Practical Guidelines: Lung Transplantation in Patients with Cystic Fibrosis
Authors Hirche TO, et al.
References Pulmonary Medicine. 2014:621342. doi: 10.1155/2014/621342. Epub 2014 Mar 30. Review
Keywords guideline, practical guideline, Lung transplant, Lung transplantation
January 2014
Title: Effects of puberty on cystic fibrosis related pulmonary exacerbations in women versus men
Authors Sutton S, Rosenbluth D, Raghavan D, Zheng J, Jain
References Pediatr Pulmonol. 2014 Jan;49(1):28-35. doi: 10.1002/ppul.22767
Keywords Exacerbation, gender disparity, puberty
December 2013
Title: A semiparametric approach to estimate rapid lung function decline in cystic fibrosis
Authors Szczesniak RD, McPhail GL, Duan LL, Macaluso M, Amin RS, Clancy JP
References Ann Epidemiol. 2013 Dec;23(12):771-7. doi: 10.1016/j.annepidem.2013.08.009. Epub 2013 Oct 5
Keywords Epidemiologic methods, Nonlinear models, Spline regression
October 2013
Title: Genetic modifiers of cystic fibrosis-related diabetes.
Authors Blackman SM, Commander CW, Watson C, Arcara KM, Strug LJ, Stonebraker JR, Wright FA, Rommens JM, Sun L, Pace RG, Norris SA, Durie PR, Drumm ML, Knowles MR, Cutting GR.
References Diabetes. 2013 Oct;62(10):3627-35. doi: 10.2337/db13-0510.
October 2013
Title: Culture-based diagnostic microbiology in cystic fibrosis: Can we simplify the complexity?
Keywords microbiology, diagnostic microbiology, culture-based, complexity, simplification
September 2013
Title: Treatment of pulmonary exacerbations in cystic fibrosis
References European Respiratory Review. 2013 Sep;22:205-216
Keywords treatment, Pulmonary exacerbation
Theme Lung Disease and Infection
June 2013
Title: Season is associated with Pseudomonas aeruginosa acquisition in young children with cystic fibrosis.
Authors Psoter KJ, De Roos AJ, Wakefield J, Mayer J, Rosenfeld M.
References Clin Microbiol Infect. 2013 Nov;19(11):E483-9. doi: 10.1111/1469-0691.12272. Epub 2013 Jun 25.
Keywords Acquisition, Pseudomonas aeruginosa, Climate, Seasonality
June 2013
Title: Drug induced complications; can we do more?
Keywords drug induced complications
April 2013
Title: Cystic Fibrosis Pulmonary Guidelines chronic medications for maintenance of lung health
Authors Mogayzel PJ, et al.
References American Journal of Respiratory and Critical Care Medicine. 2013; 187:680-689
Keywords Pulmonary, guideline, chronic medication, maintenance, lung health
Theme Lung Disease and Infection
Title: Update on cystic fibrosis-related diabetes
Keywords Diabetes, diabetes mellitus, CFRD
Title: A review of renal disease in cystic fibrosis
Keywords renal disease, Review, kidney
February 2013
Title: Molecular detection of CF lung pathogens: Current status and future potential
Keywords molecular detection, lung pathogens, nucleic acids, polymicrobial, misidentification, microbiology
December 2012
Title: Antibiotic treatment for nontuberculous mycobacteria lung infection in people with cystic fibrosis
Authors Waters V, Ratjen F
References Waters V, Ratjen F. Antibiotic treatment for nontuberculous mycobacteria lung infection in people with cystic fibrosis. Cochrane Database of Systematic Reviews 2012, Issue 12. Art. No.: CD010004. DOI: 10.1002/14651858.CD010004.pub2
Keywords antibiotic treatment, antibiotic, treatment, nontuberculous mycobacteria, lung infection
Theme Lung Disease and Infection
Title: Treatment of lung infection in patients with cystic fibrosis: Current and future strategies
References Journal of Cystic Fibrosis. 2012 Dec;11(6):461-479
Keywords treatment, lung infection, strategy, future
Theme Lung Disease and Infection
Title: Nutritional intervention in patients with Cystic Fibrosis: A systematic review
Keywords nutritional intervention, Systematic review
November 2012
Title: Report of the workshop on endpoints for cystic fibrosis clinical trials
Keywords endpoints, clinical trials, report
Title: Treatment of lung infection in patients with cystic fibrosis:Current and future strategies
Authors Döring G, Flume P, Heijerman H, Elborn JS for the consensus study group
References Journal of Cystic Fibrosis 2012; 11 : 461-79
Keywords lung, lung infection, strategy
September 2012
Title: Lung function is abnormal in 3-month-old infants with cystic fibrosis diagnosed by newborn screening
Keywords Lung function, abnormality, infants, Diagnosis, newborn, screening, nutritional status, pulmonary health
Title: Measures of body habitus are associated with lung function in adults with cystic fibrosis: A population-based study
Keywords body habitus, Lung function, population-based study, lean muscle mass, obesity
June 2012
Title: Antifungal therapies for allergic bronchopulmonary aspergillosis in people with cystic fibrosis
Authors Elphick HE, Southern KW
References Elphick HE, Southern KW. Antifungal therapies for allergic bronchopulmonary aspergillosis in people with cystic fibrosis. Cochrane Database of Systematic Reviews 2012, Issue 6. Art. No.: CD002204. DOI: 10.1002/14651858.CD002204.pub2
Keywords antifungal therapy, therapy, allergic brochopulmonary aspergillosis, allergy
Theme Lung Disease and Infection
April 2012
Title: Vitamin D supplementation for cystic fibrosis
Authors Ferguson JH, Chang AB
References Ferguson JH, Chang AB. Vitamin D supplementation for cystic fibrosis. Cochrane Database of Systematic Reviews 2012, Issue 4. Art. No.: CD007298. DOI: 10.1002/14651858.CD007298.pub3
Keywords Vitamin D, supplement, supplementation, pancreatic insufficiency, pancreatic insufficiency malabsorption, fat soluble, fat soluble vitamin, calcium homeostasis, bone mineralisation, extraskeletal effect
Theme Nutrition/Gastroenterology
Title: An update on the screening, diagnosis, management, and treatment of vitamin D deficiency in individuals with cystic fibrosis: evidence-based recommendations from the Cystic Fibrosis Foundation
Authors Tangpricha V, et al.
References The Journal of Clinical Endocrinology and Metabolism. 2012 Apr; 97(4):1082-93.
Keywords Vitamin D, vitamin D deficiency, Cystic Fibrosis Foundation, CFF
Title: Cystic fibrosis research in allied health and nursing professions
Keywords allied health, nursing, professions, research, roadmap
December 2011
Title: Chronic Cystic Fibrosis Respiratory Infections: Where do we go from here?
Keywords chronic respiratory infections, respiratory medicine
November 2011
Title: Effect of temperature on cystic fibrosis lung disease and infections: a replicated cohort study.
Authors Collaco JM, McGready J, Green DM, Naughton KM, Watson CP, Shields T, Bell SC, Wainwright CE; ACFBAL Study Group, Cutting GR
References PLoS One. 2011;6(11):e27784. doi: 10.1371/journal.pone.0027784. Epub 2011 Nov 1
September 2011
Title: A Novel Lung Disease Phenotype Adjusted for Mortality Attrition for Cystic Fibrosis Genetic Modifier Studies
Authors Taylor C, Commander CW, Collaco JM, Strug LJ, Li W, Wright FA, Webel AD, Pace RG, Stonebraker JR, Naughton K, Dorfman R, Sandford A, Blackman SM, Berthiaume Y, Paré P, Drumm ML, Zielenski J, Durie P, Cutting GR, Knowles MR, Corey M.
References Pediatr Pulmonol. 2011 Sep;46(9):857-69. doi: 10.1002/ppul.21456
August 2011
Title: Infection prevention and control in cystic fibrosis
References Curr Opin Infect Dis. 2011 Aug;24(4):390-395
Keywords infection prevention, infection control
Theme Lung Disease and Infection
June 2011
Title: Guidelines for the diagnosis and management of distal intestinal obstruction syndrome in cystic fibrosis patients
Authors Colombo C, et al.
References Journal of Cystic Fibrosis. 2011 Jun;10 Suppl 2:S24-28
Keywords guideline, Diagnosis, Management, Distal intestinal obstruction syndrome, DIOS
Theme Nutrition/Gastroenterology
Title: Best practice guidance for the diagnosis and management of cystic fibrosis-associated liver disease
References Journal of Cystic Fibrosis. 2011 Jun; 10 Suppl 2: S29-36
Keywords best practice, guidance, guideline, Diagnosis, Management, liver disease, cystic fibrosis-associated liver disease
Theme Nutrition/Gastroenterology
Title: Recommendations for the classification of diseases as CFTR-related disorders
Authors Bombieri C, et al.
References Journal of Cystic Fibrosis. 2011 Volume 10 Suppl 2:S86-S102
Keywords recommendation, classification, disease, CFTR, CFTR-related, disorder
Theme Diagnosis/Screening
Title: Guideline on the design and conduct of cystic fibrosis clinical trials: the European Cystic Fibrosis Society-Clinical Trials Network (ECFS-CTN)
Authors De Boeck K, et al.
References Journal of Cystic Fibrosis. 2011 Jun; 10 Suppl 2: S67-74
Keywords guideline, design, conduct, clinical trials, clinical trials network, CTN, ECFS-CTN
Theme Care of patients with CF, Clinical Trials, Pregnancy with CF
Title: European cystic fibrosis bone mineralisation guidelines
Authors Sermet-Gaudelus I, et al.
References Journal of Cystic Fibrosis. 2011 Jun;10 Suppl 2:S16-23
Keywords bone mineralisation, guidelines
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
December 2010
Title: Clinical Care Guidelines for Cystic Fibrosis-Related Diabetes
References Diabetes Care Dec.2010; Vol 33 no 12:2697-2708
Keywords clinical care, care, guideline, Diabetes, cf-related
November 2010
Title: EuroCareCF: Report on the demographics of cystic fibrosis in 35 European countries
References (European Coordination Action for Research in Cystic Fibrosis; EC FP6 project no. LSHM-CT-2005-018932).
Keywords Europe, EuroCareCF, demographic, data, analysis
September 2010
Title: Guidelines on the early management of infants diagnosed with cystic fibrosis following newborn screening
Authors Sermet-Gaudelus I, et al.
References Journal of Cystic Fibrosis. 2010 Sep;9(5):323-329
Keywords guideline, infant, Diagnosis, Newborn screening
Theme Care of patients with CF, Clinical Trials, Pregnancy with CF
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
August 2010
Title: Cystic Fibrosis Pulmonary Guidelines Pulmonary Complications: Hemoptysis and Pneumothorax
References Am J Respir Crit Care Med 2010, Vol 182: M298-306
Keywords pulmonary guideline, pulmonary complication, Hemoptysis, pneumothorax
Theme Lung Disease and Infection
May 2010
Title: Benchmarks for Cystic Fibrosis carrier screening: A European consensus document
Authors Castellani C, et al.
References Journal of Cystic Fibrosis. 2010 May;9(3):165-178
Keywords benchmark, carrier screening, Europe, European, consensus
Theme Diagnosis/Screening
December 2009
Title: Cystic Fibrosis Foundation Practice Guidelines for the Management of Infants with Cystic Fibrosis Transmembrane Conductance Regulator-Related Metabolic Syndrome during the First two Years of Life and Beyond
Authors Borowitz D , et al.
References The Journal of Pediatrics, vol. 155, No. 6, Suppl. 4: S106-S116
Keywords Cystic Fibrosis Foundation, Management, infant, transmembrane conductance regulator-related metabolic syndrome
Theme Care of patients with CF, Clinical Trials, Pregnancy with CF
Title: Cystic Fibrosis Foundation Evidence-Based Guidelines for Management of Infants with Cystic Fibrosis
Authors Borowitz D, et al.
References The Journal of Pediatrics, vol. 155, No. 6, Suppl. 4: S73-S93
Keywords evidence-based, guideline, Management, infant
Theme Care of patients with CF, Clinical Trials, Pregnancy with CF
Title: Management of Infants with Cystic Fibrosis: A Summary of the Evidence for the cystic Fibrosis Foundation Working Group on Care of Infants with Cystic Fibrosis
Authors Robinson KA, et al.
References The Journal of Pediatrics, vol. 155, No. 6, Suppl. 4: S94-S105
Keywords Management, infant, evidence, Cystic Fibrosis Foundation, working group on care of infants
Theme Care of patients with CF, Clinical Trials, Pregnancy with CF
November 2009
Title: Cystic Fibrosis Pulmonary Guidelines: Treatment of Pulmonary Exacerbations
Authors Flume P A, et al.
References American Journal of Respiratory and Critical Care Medicine. 2009; 180:802-808
Keywords pulmonary guideline, Pulmonary exacerbation, treatment, guideline
Theme Lung Disease and Infection
September 2009
Title: Inhaled medications and inhalation devices for lung disease in patients with Cystic Fibrosis: A European Consensus
References Journal of Cystic Fibrosis. 2009 Sep;8(5):295-315
Keywords inhaled medication, inhalation device, Lung disease, European, Europe, consensus
Theme Lung Disease and Infection
August 2009
Title: BTS guidelines for home oxygen in children
Authors Balfour-Lynn I M, et al.
References Thorax.2009;64:ii1-ii26
Keywords BTS, guideline, home oxygen, Child, oxygen, British Thoracic Society
Theme Lung Disease and Infection
Title: EASL Clinical Practice Guidelines: Management of cholestatic liver disease
Authors Clinical Practice Guidelines Panel, Beuers U, et al.
References Journal of Hepatology. 2009; 51:237-267
Keywords EASL, clinical practice, guideline, Management, cholestatic liver disease, liver
Theme Nutrition/Gastroenterology
June 2009
Title: Airway-clearance therapy guidelines and implementation
Authors Lester MK, Flume PA
References Respiratory Care. 2009;54(6):733-750; discussion 751-753
Keywords airway clearance therapy, airway clearance, Airway, guideline, implementation
Theme Physiotherapy/Exercise testing
Title: Inhaled medication and inhalation devices for lung disease in patients with cystic fibrosis: A European consensus
Authors H. Heijermann, E. Westerman, S. Conway, D. Touw, G. Döring for the consensus working group
References Journal of Cystic Fibrosis 2009; 8 : 295-315
Keywords inhaled medication, inhalation devices, Lung disease
May 2009
Title: Guidelines for the physiotherapy management of the adult, medical, spontaneously breathing patient
References Thorax.2009;64:i1-i52
Keywords guideline, physiotherapy, Management, Adult, medical, spontaneously breathing, breathing, patient
Theme Physiotherapy/Exercise testing
Title: European best practice guidelines for cystic fibrosis neonatal screening
Authors Castellani C, et al.
References Journal of Cystic Fibrosis. 2009 May;8(3):153-173
Keywords best practice, guideline, neonatal screening
Theme Diagnosis/Screening
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
April 2009
Title: Cystic Fibrosis Pulmonary Guidelines: Airway Clearance Therapies
Authors Flume P A, et al.
References Respiratory Care. 2009; 54(4):522-537
Keywords pulmonary guideline, airway clearance therapy, Airway, airway clearance
Theme Physiotherapy/Exercise testing
January 2009
Title: Best practice guidelines for molecular genetic diagnosis of cystic fibrosis and CFTR-related disorders – updated European recommendations
Authors Dequeker E, et al.
References European Journal of Human Genetics. 2009;17:51-65
Keywords best practice, guideline, molecular genetic diagnosis, Diagnosis, CFTR-related disorders, CFTR, Europe, European, recommendation
Theme Diagnosis/Screening
Title: A European Consensus for the evaluation and management of infants with an equivocal diagnosis following newborn screening for cystic fibrosis
Authors Mayell SJ, et al.
References Journal of Cystic Fibrosis. 2009 Jan;8(1):71-78
Keywords Europe, European, consensus, evaluation, Management, infant, equivocal, Diagnosis, equivocal diagnosis, Newborn screening
Theme Diagnosis/Screening
October 2008
Title: A European consensus for the evaluation and management of infants with an equivocal diagnosis following newborn screening for cystic fibrosis
Authors S.J. Mayell, A. Munck, J.V. Craig, I. Sermet, K.G. Brownlee, M.J. Schwarz, C. Castellani, K.W. Southern On behalf of the European Cystic Fibrosis Society Neonatal Screening Working Group
References Journal of Cystic Fibrosis 2009; 8 : 71-78
Keywords infants, Newborn screening, evaluation, Management
August 2008
Title: Guidelines for Diagnosis of Cystic Fibrosis in Newborns through Older Adults: Cystic Fibrosis Foundation Consensus Report
Authors Farrell P M, et al.
References The Journal of Pediatrics. 2008: 153:S4-S14
Keywords guideline, Diagnosis, newborn, older adult, Adult, Cystic Fibrosis Foundation, consensus
Theme Diagnosis/Screening
Title: Diagnosis of Cystic Fibrosis by Sweat Testing: Age-Specific Reference Intervals
References The Journal of Pediatrics. 2008; 153(6):758-763
Keywords Diagnosis, sweat testing, age-specific reference intervals, referance intervals
Theme Diagnosis/Screening
Title: Management of Cystic Fibrosis-related diabetes (ISPAD Clinical Practice Consensus Guidelines)
Authors O’Riordan SMP, et al.
References Pediatric Diabetes 2008. 9(PartI):338-344
Keywords Management, cf-related, Diabetes, ISPAD, clinical practice, ISPAD Clinical Practice Consensus Guidelines, consensus
May 2008
Title: Evidence-based practice recommendations for nutrition-related management of children and adults with CF and pancreatic insufficiency: results of a systematic review
Authors Stallings VA, et al.
References Journal of American Dietetic Association. 2008 May;108(5):832-839
Keywords evidence-based, practice, recommendations, Nutrition, nutrition-related, Children, Child, Adult, pancreatic insufficiency, Systematic review
Theme Nutrition/Gastroenterology
