The expansion and performance of national newborn screening programmes for cystic fibrosis in Europe Jürg Barben, Carlo Castellani, Jeannette Dankert-Roelse,

Slides:

Advertisements

Similar presentations

Long-term non-invasive ventilation in cystic fibrosis — Experience over two decades William G. Flight, Jonathan Shaw, Susan Johnson, A. Kevin Webb, Andrew.

Advertisements

Comparing age of cystic fibrosis diagnosis and treatment initiation after newborn screening with two common strategies Don B. Sanders, Huichuan J. Lai,

Safety and efficacy of Creon® Micro in children with exocrine pancreatic insufficiency due to cystic fibrosis Nataliya Y. Kashirskaya, Nikolay I. Kapranov,

Ian D. Molyneux, Tanya Moon, A. Kevin Webb, Alyn H. Morice

C. P. B. van der Ploeg, M. E. van den Akker-van Marle, A. M. M

Cystic Fibrosis Foundation and European Cystic Fibrosis Society Survey of cystic fibrosis mental health care delivery J. Abbott, J.S. Elborn, A.M. Georgiopoulos,

Treatment compliance in children and adults with Cystic Fibrosis

Long-term follow-up of cystic fibrosis newborn screening: Psychosocial functioning of adolescents and young adults Audrey Tluczek, Anita Laxova, Adam.

Cystic Fibrosis Screen Positive, Inconclusive Diagnosis (CFSPID): A new designation and management recommendations for infants with an inconclusive diagnosis.

The immediate effect of musculoskeletal physiotherapy techniques and massage on pain and ease of breathing in adults with cystic fibrosis Annemarie Lee,

Causes of death in French cystic fibrosis patients: The need for improvement in transplantation referral strategies! Clémence Martin, Cécile Hamard,

R. Roberts, L. Speight, J. Lee, L. George, R. I. Ketchell, D. Lau, J

Abaigeal D. Jackson, Christopher H. Goss Journal of Cystic Fibrosis

Carlo Castellani, Kevin W

How does heart rate recovery after sub-maximal exercise correlate with maximal exercise testing in children with CF? Sarah P. Cohen, David M. Orenstein

Megan R. Nelson, Craig R. Adamski, Audrey Tluczek

Urinary incontinence in 9��16��year olds with cystic fibrosis compared to other respiratory conditions and a normal group W.J. Browne, C.J. Wood, M.

Measures of body habitus are associated with lung function in adults with cystic fibrosis: A population-based study Doug L. Forrester, Alan J. Knox,

Laura Viviani, Baroukh M. Assael, Eitan Kerem

Cirrhosis and other liver disease in cystic fibrosis

Katelyn Krivchenia, Don Hayes, Joseph D. Tobias, Dmitry Tumin

Rate of improvement of CF life expectancy exceeds that of general population— Observational death registration study Matthew N. Hurley, Tricia M. McKeever,

Controlled clinical trials in cystic fibrosis — are we doing better?

Adherence to nebulised therapies in adolescents with cystic fibrosis is best on week- days during school term-time Rosemary Ball, Kevin W. Southern, Pamela.

Anju Anand, Elizabeth Tullis, Anne Stephenson, Preyanka Abhyankar

D. Stevens, P.J. Oades, N. Armstrong, C.A. Williams

Claire J. Tipping, Rebecca L. Scholes, Narelle S. Cox

Cystic fibrosis mortality trend in Italy from 1970 to 2011

Influence of digital clubbing on oxygen saturation measurements by pulse-oximetry in cystic fibrosis patients Filip Van Ginderdeuren, Karlien Van Cauwelaert,

Vitamin A and lung function in CF

Amyloidosis in cystic fibrosis: A case series

Measurement of fecal elastase improves performance of newborn screening for cystic fibrosis Juerg Barben, Corina S. Rueegg, Maja Jurca, Johannes Spalinger,

Spontaneous coronary artery dissection associated with coughing

A.H. Gifford Journal of Cystic Fibrosis

Inhalation solutions — Which ones may be mixed

Antonia V. Bennett, Donald L. Patrick, James F. Lymp, Todd C

Characterisation of mutations and genotype–phenotype correlation in cystic fibrosis: Experience from India Shivaram S. Shastri, Madhulika Kabra, Sushil.

E. Tschiedel, H. Grasemann, F. Ratjen Journal of Cystic Fibrosis

Colon Cancer in Cystic Fibrosis patients: Is this a growing problem?

Sally H. Pattison, Geraint B. Rogers, Martin Crockard, J

Prevalence and risk factors for recovery of filamentous fungi in individuals with cystic fibrosis Christopher R. Sudfeld, Elliott C. Dasenbrook, William.

Positive parental attitudes to participating in research involving newborn screened infants with CF Jane Chudleigh, Ah-Fong Hoo, Deeba Ahmed, Ammani.

Nasal polyposis in lung transplant recipients with cystic fibrosis

D.Y.F. Mak, J. Sykes, A.L. Stephenson, L.C. Lands

Novel concepts in evaluating antimicrobial therapy for bacterial lung infections in patients with cystic fibrosis Geraint B. Rogers, Lucas R. Hoffman,

Nutritional decline in cystic fibrosis related diabetes: The effect of intensive nutritional intervention H. White, K. Pollard, C. Etherington, I. Clifton,

Gender differences in treatment adherence among youth with cystic fibrosis: Development of a new questionnaire Joän M. Patterson, Melanie Wall, Jerica.

Segregation of children with CF diagnosed via newborn screening and acquisition of Pseudomonas aeruginosa Karen O. McKay, Peter J. Cooper, Peter P. van.

Higher risk of hospitalization among females with cystic fibrosis

Trends in pathogens colonising the respiratory tract of adult patients with cystic fibrosis, 1985–2005 F.A. Millar, N.J. Simmonds, M.E. Hodson Journal.

Successful treatment of cepacia syndrome with a combination of intravenous cyclosporin, antibiotics and oral corticosteroids Francis J. Gilchrist, A.

V. Thompson, N. Mayer-Hamblett, M. Kloster, D. Bilton, P.A. Flume

Comparing age of cystic fibrosis diagnosis and treatment initiation after newborn screening with two common strategies Don B. Sanders, Huichuan J. Lai,

H. White, A.M. Morton, S.P. Conway, D.G. Peckham

J.E. Spahr, R.B. Love, M. Francois, K. Radford, K.C. Meyer

A European consensus for the evaluation and management of infants with an equivocal diagnosis following newborn screening for cystic fibrosis S.J. Mayell,

Michael W. Konstan, David J. Pasta, Jeffrey S. Wagener, Donald R

Retrospective analysis of stored dried blood spots from children with cystic fibrosis and matched controls to assess the performance of a proposed newborn.

CFTR modulators and pregnancy: Our work has only just begun

‘Peeling paint’ dermatitis as a presenting sign of cystic fibrosis

L. Nshimyumukiza, A. Bois, P. Daigneault, L. Lands, A. -M. Laberge, D

Beta-lactam allergy in adults with cystic fibrosis

Predictors of non-referral of patients with cystic fibrosisfor lung transplant evaluation in the United States Kathleen J. Ramos, Bradley S. Quon, Kevin.

A survey of newborn screening for cystic fibrosis in Europe

Lutz Goldbeck, Sven Zerrer, Tim G. Schmitz Journal of Cystic Fibrosis

Khin M. Gyi, Margaret E. Hodson, Magdi Y. Yacoub

David Adeboyeku, Sandra Scott, Margaret E. Hodson

Elisabeth P. Dellon, Margaret W. Leigh, James R. Yankaskas, Terry L

Anne K. Swisher, Kathryn Moffett, Linda Baer

Respiratory physicians and clinic coordinators' attitudes to population-based cystic fibrosis carrier screening Fiona Cunningham, Sharon Lewis, Lisette.

Presentation transcript:

The expansion and performance of national newborn screening programmes for cystic fibrosis in Europe Jürg Barben, Carlo Castellani, Jeannette Dankert-Roelse, Silvia Gartner, Nataliya Kashirskaya, Barry Linnane, Sarah Mayell, Anne Munck, Dorota Sands, Olaf Sommerburg, Simon Pybus, Victoria Winters, Kevin W Southern Journal of Cystic Fibrosis Volume 16, Issue 2, Pages 207-213 (March 2017) DOI: 10.1016/j.jcf.2016.12.012 Copyright © 2016 European Cystic Fibrosis Society Terms and Conditions

Journal of Cystic Fibrosis 2017 16, 207-213DOI: (10. 1016/j. jcf. 2016 Copyright © 2016 European Cystic Fibrosis Society Terms and Conditions

Fig. 1 The status of NBS for CF in Europe in 2000, 2006 and 2016. National programmes are coloured dark green and regional programmes, light green. Countries considering or planning NBS for CF are coloured orange and those with no plans, white. Journal of Cystic Fibrosis 2017 16, 207-213DOI: (10.1016/j.jcf.2016.12.012) Copyright © 2016 European Cystic Fibrosis Society Terms and Conditions