The Journal of Pediatrics
Volume 153, Issue 6 , Pages 733-735 , December 2008

Patient Registry Analyses: Seize the Data, but Caveat Lector

  • Michael S. Schechter, MD, MPH

      Affiliations

    • Corresponding Author InformationReprint requests: Michael S. Schechter, MD, MPH, Division of Pulmonary, Allergy/Immunology, Cystic Fibrosis and Sleep, Department of Pediatrics, Emory University School of Medicine, 1547 Clifton Road, Atlanta, GA 30322

References 

  1. Michel G, von der Weid NX, Zwahlen M, Adam M, Rebholz CE, Kuehni CE. The Swiss Childhood Cancer Registry: rationale, organisation and results for the years 2001-2005. Swiss Med Wkly. 2007;137:502–509
  2. Steele JR, Wellemeyer AS, Hansen MJ, Reaman GH, Ross JA. Childhood Cancer Research Network: a North American Pediatric Cancer Registry. Cancer Epidemiol Biomarkers Prev. 2006;15:1241–1242
  3. Walsh MC, Yao Q, Horbar JD, Carpenter JH, Lee SK, Ohlsson A. Changes in the use of postnatal steroids for bronchopulmonary dysplasia in 3 large neonatal networks. Pediatrics. 2006;118:e1328–e1335
  4. Eng CM, Fletcher J, Wilcox WR, Waldek S, Scott CR, Sillence DO, et al. Fabry disease: baseline medical characteristics of a cohort of 1765 males and females in the Fabry Registry. J Inherit Metab Dis. 2007;30:184–192
  5. Dowling NF, Beckman MG, Manco-Johnson M, Hassell K, Philipp CS, Michaels LA, et al. The US Thrombosis and Hemostasis Centers pilot sites program. J Thromb Thrombolysis. 2007;23:1–7
  6. Pitukcheewanont P, Desrosiers P, Steelman J, Rapaport R, Fuqua JS, Kreher NC, et al. Issues and trends in pediatric growth hormone therapy: an update from the GHMonitor observational registry. Pediatr Endocrinol Rev. 2008;5(Suppl 2):702–707
  7. In:  Gliklich R,  Dreyer N editor. Registries for evaluating patient outcomes: a user's guide. Rockville, MD: Agency for Healthcare Research and Quality; 2007;AHRQ publication 07-EHC001-1 http://effectivehealthcare.ahrq.gov/repFiles/PatOutcomes.pdf
  8. Curtis JR, Burke W, Kassner A, Aitkin ML. Absence of health insurance is associated with decreased life expectancy in patients with cystic fibrosis. Am J Respir Crit Care Med. 1997;155:1921–1924
  9. Schechter MS, Margolis PA. Relationship between socioeconomic status and disease severity in cystic fibrosis. J Pediatrics. 1998;132:260–264
  10. McPhail G, Acton JD, Fenchel MC, Amin RS, Seid M. Improvements in lung function outcomes in children with cystic fibrosis are associated with better nutrition, fewer chronic Pseudomonas aeruginosa infections, and dornase alfa use. J Pediatr. 2008;153:752–757
  11. Schechter MS, Margolis P. Improving subspecialty healthcare: lessons from cystic fibrosis. J Pediatr. 2005;147:295–301
  12. Morgan WJ, Butler SM, Johnson CA, Colin AA, FitzSimmons SC, Geller DE, et al. Epidemiologic study of cystic fibrosis: design and implementation of a prospective, multicenter, observational study of patients with cystic fibrosis in the US and Canada. Pediatr Pulmonol. 1999;28:231–241
  13. Quittner AL, Buu A, Messer MA, Modi AC, Watrous M. Development and validation of The Cystic Fibrosis Questionnaire in the United States: a health-related quality-of-life measure for cystic fibrosis. Chest. 2005;128:2347–2354
  14. Schmoor C, Caputo A, Schumacher M. Evidence from nonrandomized studies: a case study on the estimation of causal effects. Am J Epidemiol. 2008;167:1120–1129
  15. Ren C, Pasta D, Rasouliyan L, Wagener J, Konstan M, Morgan W. Relationship between inhaled corticosteroid therapy and rate of lung function decline in children with cystic fibrosis. J Pediatr. 2008;153:746–751
  16. Balfour-Lynn IM, Lees B, Hall P, Phillips G, Khan M, Flather M, et al. Multicenter randomized controlled trial of withdrawal of inhaled corticosteroids in cystic fibrosis. Am J Respir Crit Care Med. 2006;173:1356–1362
  17. Konstan MW, Morgan WJ, Butler SM, Pasta DJ, Craib ML, Silva SJ, et al. Risk factors for rate of decline in forced expiratory volume in one second in children and adolescents with cystic fibrosis. J Pediatr. 2007;151:134–139

 The author is a member of the North American Scientific Advisory Group of the Epidemiologic Study of Cystic Fibrosis, and receives an annual consulting fee for this activity.

PII: S0022-3476(08)00776-2

doi: 10.1016/j.jpeds.2008.09.011

The Journal of Pediatrics
Volume 153, Issue 6 , Pages 733-735 , December 2008

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