Journal of Cystic Fibrosis
Volume 6, Issue 3 , Pages 187-193 , May 2007

A specific database for providing local and national level of integration of clinical data in cystic fibrosis

  • T. Leal

      Affiliations

    • Clinical Chemistry, Université Catholique de Louvain, Brussels, Belgium
    • ,
  • G. Reychler

      Affiliations

    • Rehabilitation and Physical Medicine, Université Catholique de Louvain, Brussels, Belgium
    • ,
  • P. Mailleux
    • ,
  • J. Gigi

      Affiliations

    • Bacteriology, Université Catholique de Louvain, Brussels, Belgium
    • ,
  • V. Godding

      Affiliations

    • Pneumology, Université Catholique de Louvain, Brussels, Belgium
    • ,
  • P. Lebecque

      Affiliations

    • Pneumology, Université Catholique de Louvain, Brussels, Belgium
    • Corresponding Author InformationCorresponding author. Pediatric Pneumology, Cystic Fibrosis Reference Center, St Luc University Hospital, 10 Av Hippocrate; B-1200 Brussels, Belgium. Tel.: +32 2 764 19 39; fax: +32 2 764 89 06.

Received 4 May 2006 ,Revised 6 July 2006 ,Accepted 17 July 2006.

References 

  1. Davis PB. Cystic fibrosis since 1938. Am J Respir Crit Care Med. 2006;173:475–482
  2. Mahadeva R, Webb K, Westerbeek RC, Carroll NR, Dodd ME, Bilton D, et al. Clinical outcome in relation to care in centres specializing in cystic fibrosis: cross sectional study. BMJ. 1998;316:1771–1775
  3. Johnson C, Butler SM, Konstan MV, Morgan W, Wohl ME. Factors influencing outcomes in cystic fibrosis. A center based analysis. Chest. 2003;123:20–27
  4. Kerem E, Conway S, Elborn S, Heijerman H. Consensus Committee. Standards of care for patients with cystic fibrosis: a European consensus. J Cyst Fibros. 2005;4:7–26
  5. Reychler G, Mailleux P, Gigi J, Leal T, Godding V, Lebecque P. A CF-specific database as a clinical and epidemiological tool. J Cyst Fibros. 2004;3:S115
  6. Knudson R, Lebowitz M, Holberg C, Burrows B. Changes in the normal maximal expiratory flow-volume curve with growth and aging. Am Rev Respir Dis. 1983;127:725–734
  7. Eigen H, Bieler H, Grant D, Christopher K, Terril D, Heilman D, et al. Spirometric pulmonary function in healthy preschool children. Am J Respir Crit Care Med. 2001;163:619–623
  8. Cole TJ. The LMS method for constructing normalized growth standards. Eur J Clin Nutr. 1990;44:45–60
  9. Poustie VJ, Watling RM, Ashby D, Smith RL. Reliability of percentage ideal weight for height. Arch Dis Child. 2000;83:183–184
  10. Lee T, Brownlee K, Conway S, Denton M, Littlewood J. Evaluation of a new definition for chronic Pseudomonas aeruginosa infection in cystic fibrosis patients. J Cyst Fibros. 2003;2:29–34
  11. Cystic Fibrosis Foundation, Patient Registry 2004 Annual Report, Bethesda, Maryland
  12. Mehta G, Sims EJ, Culross F, McCormick JD, Mehta A. Potential benefits of the UK cystic fibrosis database. J R Soc Med. 2004;97(Suppl 44):60–71
  13. Caldwell EJ, Dziodzio JT. CF-specific computerized clinical patient data management system. Pediatr Pulmonol. 1993;S9:285–286
  14. Caldwell EJ, Dziodzio JT, Cairns AM. Team-oriented clinical management system for cystic fibrosis. Pediatr Pulmonol. 1996;S13:345
  15. Caldwell EJ, Dziodzio JT, Cairns AM. Integrated cystic fibrosis clinical data management system for Microsoft® Windows. Pediatr Pulmonol. 1998;S17:409
  16. Caldwell EJ, Dziodzio JT, Cairns AM, Zuckerman JB. Quality assurance in the clinical record: tracking clinical practice via an electronic medical record system. Pediatr Pulmonol. 2000;S20:341–342
  17. Haan CK, Adams M, Cook R. Improving the quality of data in your database: lessons from a cardiovascular center. Jt Comm Qual Saf. 2004;30:681–688
  18. Belgish Mucoviscidose Register-Registre Belge de la Mucoviscidose-1999, 2000, 2001, 2002. Annual Data Report, Belgium.
  19. Sims E, McCorninck J, Green MW, Mehta G, Culross F, Mehta A. Call for standardisation of national registry reports — the problem outlined. J Cyst Fibros. 2003;2:S383
  20. Sims EJ, McCorninck J, Green MW, Mehta G, Culross F, Mehta A. Call for standardisation of national CF database reports — an interim solution. J Cyst Fibros. 2003;2:S384
  21. McCorninck J, Sims EJ, Green MW, Mehta G, Culross F, Mehta A. Comparative analysis of cystic fibrosis registry data from the UK with USA, France and Australia. J Cyst Fibros. 2005;4:115–122

☆ Supported by grants from the Belgian CF Association

PII: S1569-1993(06)00116-0

doi: 10.1016/j.jcf.2006.07.002

Journal of Cystic Fibrosis
Volume 6, Issue 3 , Pages 187-193 , May 2007

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