Hostname: page-component-848d4c4894-ndmmz Total loading time: 0 Render date: 2024-06-08T19:26:45.789Z Has data issue: false hasContentIssue false
  • English
  • Français

Can linking databases answer questions about paediatric heart failure?*

Published online by Cambridge University Press:  17 September 2015

Sara K. Pasquali ,
Kurt R. Schumacher  and
Ryan R. Davies
Sara K. Pasquali*
Affiliation:
Department of Pediatrics, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
Kurt R. Schumacher
Affiliation:
Department of Pediatrics, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
Ryan R. Davies
Affiliation:
Nemours Cardiac Center, Nemours/A.I. duPont Hospital for Children, Wilmington, Delaware, United States of America
*
Correspondence to: S. K. Pasquali, MD MHS, Associate Professor of Pediatrics, University of Michigan Congenital Heart Center, C.S. Mott Children’s Hospital, 1540 E. Hospital Drive 11-715z, Ann Arbor, Michigan 48109, United States of America. Tel: (734) 232-8594; Fax: (734) 936-9470; E-mail: pasquali@med.umich.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Numerous data sets collect information on patients with paediatric cardiovascular disease, including paediatric heart failure and transplant patients. This review discusses methodologies available for linking and integrating information across data sets, which may help facilitate answering important questions in the field of paediatric heart failure and transplant that cannot be answered with individual data sets or single-centre data alone.

Keywords

Databaseheart failure
Type
Original Articles
Information
Cardiology in the Young , Volume 25 , Supplement S2: Special Supplement of Cardiology in the Young: Proceedings of the 2015 International Paediatric Heart Failure Summit of Johns Hopkins All Children's Heart Institute , August 2015 , pp. 160 - 166
Copyright
© Cambridge University Press 2015 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Footnotes

*

Presented at Johns Hopkins All Children’s Heart Institute, International Pediatric Heart Failure Summit, Saint Petersburg, Florida, United States of America, 4–5 February, 2015.

References

1. Merelli, I, Perez-Sanchez, H, Gesing, S, D’Agostino, D. Managing, analyzing, and integrating big data in medical bioinformatics: open problems and future perspectives. Biomed Res Int 2014; 2014: 134023, Epub 2014 Sep 1.CrossRefGoogle Scholar
2. Using bid data to fight range anxiety in electric vehicles. Retrieved January 2, 2011, from http://spectrum.ieee.org/cars-that-think/transportation/sensors/using-big-data-to-fight-range-anxiety-in-electric-vehicles Google Scholar
3. Davies, RR, Pizarro, C. Using the UNOS/SRTR and PHTS databases to improve quality in pediatric cardiac transplantation. World J Pediatr Congenit Heart Surg 2012; 3: 421–432.Google Scholar
4. Pasquali, SK, Jacobs, ML, Jacobs, JP. Linking Databases. Pediatric and Congenital Cardiac Disease: Outcomes Analysis, Quality Improvement, and Patient Safety. Springer-Verlag, London, UK, 2015.Google Scholar
5. Pasquali, SK, Jacobs, JP, Shook, GJ, et al. Linking clinical registry data with administrative data using indirect identifiers: Implementation and validation in the congenital heart surgery population. Am Heart J 2010; 160: 1099–1104.Google Scholar
6. Jacobs, JP, Edwards, FH, Shahian, DM, et al. Successful linking of the society of thoracic surgeons adult cardiac surgery database to centers for medicare and medicaid services medicare data. Ann Thorac Surg 2010; 90: 1150–1157.Google Scholar
7. Jacobs, JP, Edwards, FH, Shahian, DM, et al. Successful linking of the STS database to social security data to examine survival after cardiac surgery. Ann Thorac Surg 2011; 92: 32–37.Google Scholar
8. Saleeb, SF, Li, WYV, Warren, SZ, Lock, JE. Effectiveness of screening for life-threatening chest pain in children. Pediatrics 2011; 128: e1062–e1068.CrossRefGoogle ScholarPubMed
9. Dokholyan, RS, Muhlbaier, LH, Falletta, J, et al. Regulatory and ethical considerations for linking clinical and administrative databases. Am Heart J 2009; 157: 971–982.Google Scholar
10. Hammill, BG, Hernandez, AF, Peterson, ED, Fonarow, GC, Schulman, KA, Curtis, LH. Linking inpatient clinical registry data to Medicare claims data using indirect identifiers. Am Heart J 2009; 157: 995–1000.Google Scholar
11. Pasquali, SK, Li, JS, He, X, et al. Perioperative methylprednisolone and outcome in neonates undergoing heart surgery. Pediatrics 2012; 129: e385–e391.Google Scholar
12. Pasquali, SK, Li, JS, He, X, et al. Comparative analysis of antifibrinolytic medications in pediatric heart surgery. J Thorac Cardiovasc Surg 2012; 143: 550–557.Google Scholar
13. Pasquali, SK, Jacobs, ML, He, X, et al. Variation in congenital heart surgery costs across hospitals. Pediatrics 2014; 133: e553–e560.Google Scholar
14. McHugh, KE, Pasquali, SK, Hall, MA, Scheurer, MA. Association of post-operative complications with clinical outcomes and hospital costs following the Norwood operation. Circulation 2014; 130: A17406.CrossRefGoogle Scholar
15. Burstein, DS, Jacobs, JP, Sheng, S, et al. Care models in congenital heart surgery and associated outcomes. Pediatrics 2011; 127: e1482–e1489.Google Scholar
16. Gaies, M, Jeffries, H, Niebler, R, et al. Vasoactive Inotropic Score (VIS) is associated with outcome after infant cardiac surgery: a report of the Pediatric Cardiac Critical Care Consortium (PC4). J Am Coll Cardiol 2013; 61: E424.CrossRefGoogle Scholar
17. Vener, DF, Jacobs, JP, Schindler, E, Maruszewski, B, Andropoulos, D. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of anaesthesia. Cardiol Young 2008; 18 (Suppl 2): 124–129.Google Scholar
18. Pearson, GD, Kaltman, JR, Lauer, MS. Evidence-based medicine comes of age in pediatric cardiology. J Am Coll Cardiol 2013; 61: 2565–2567.Google Scholar
19. Johnson, SB, Whitney, G, McAuliffe, M. Using global unique identifiers to link autism collections. J Am Med Inform Assoc 2010; 17: 689–695.Google Scholar
20. Toh, S, Platt, R, Steiner, JF, Brown, JS. Comparative-effectiveness research in distributed health data networks. Clin Pharmacol Therapeut 2011; 90: 883–887.Google Scholar
21. Schumacher, KR, Stringer, KA, Donohue, JE, et al. Social media methods for studying rare diseases. Pediatrics 2014; 133: e1345–e1353.CrossRefGoogle ScholarPubMed
22. T3. Retrieved January 2, 2015, from http://www.etiometry.com/technology/ Google Scholar
23. Hsu, DT. Heart failure in children: Part I: history, etiology, and pathophysiology. Circ Heart Fail 2009; 2: 63–70.Google Scholar
24. Davies, RR, Russo, MJ, Hong, KN, et al. Increased short- and long-term mortality at low-volume pediatric heart transplant centers: should minimum standards be set? Retrospective data analysis. Ann Surg 2011; 253: 393–401.Google Scholar
25. OPTN Final Rule. 42 C.F.R. Part 121.11 (b) (2).Google Scholar
26. Davies, RR, Russo, MJ, Yang, J, Quaegebeur, JM, Mosca, RS, Chen, JM. Listing and transplanting adults with congenital heart disease. Circulation 2011; 123: 759–767.CrossRefGoogle ScholarPubMed
27. Davies, RR, Sorabella, RA, Yang, J, Mosca, RS, Chen, JM, Quaegebeur, JM. Outcomes after transplantation for “failed” Fontan: a single-institution experience. J Thorac Cardiov Surg 2012; 143: 1183–1192.Google Scholar
28. Chen, JM, Davies, RR, Mercando, ML, et al. Trends and outcomes in transplantation for complex congenital heart disease: 1984 to 2004. Ann Thorac Surg 2004; 78: 1352–1361.Google Scholar
29. Lamour, JM, Kanter, KR, Naftel, DC, Morrow, WR, Clemson, BS, Kirklin, JK. Cardiac Transplant Registry Database, Investigators Pediatric Heart Transplant Study. The effect of age, diagnosis, and previous surgery in children and adults undergoing heart transplantation for congenital heart disease. J Am Coll Cardiol 2009; 54: 160–165.Google Scholar
30. Davies, RR, Russo, MJ, Morgan, JA, Sorabella, RA, Naka, Y, Chen, JM. Standard versus bicaval techniques for orthotopic heart transplantation: an analysis of the United Network for Organ Sharing database. J Thorac Cardiov Surg 2010; 140: 700–708; 708.e1–2.CrossRefGoogle ScholarPubMed
31. Weiss, ES, Nwakanma, LU, Russell, SB, Conte, JV, Shah, AS. Outcomes in bicaval versus biatrial techniques in heart transplantation: an analysis of the UNOS database. J Heart Lung Transpl 2008; 27: 178–183.Google Scholar
32. Russo, MJ, Hong, KN, Davies, RR, et al. Posttransplant survival is not diminished in heart transplant recipients bridged with implantable left ventricular assist devices. J Thorac Cardiov Surg 2009; 138: 1425–1432.CrossRefGoogle ScholarPubMed
33. Davies, RR, Haldeman, S, McCulloch, MA, Pizarro, C. Creation of a quantitative score to predict the need for mechanical support in children awaiting heart transplant. Ann Thorac Surg 2014; 98: 675–682.Google Scholar
34. Davies, RR, Russo, MJ, Hong, KN, et al. The use of mechanical circulatory support as a bridge to transplantation in pediatric patients: an analysis of the United Network for Organ Sharing database. J Thorac Cardiov Surg 2008; 135: 421–427.Google Scholar
35. Stehlik, J, Hosenpud, JD, Edwards, LB, Hertz, MI, Mehra, MR. International Society for Heart and Lung Transplantation. ISHLT International Registry for Heart and Lung Transplantation – into the fourth decade, from strength to strength. J Heart Lung Transpl 2013; 32: 941–950.Google Scholar
36. Pediatric Heart Transplant Study. Retrieved January 2, 2015, from http://www.uab.edu/medicine/phts/ Google Scholar
37. Grenier, MA, Osganian, SK, Cox, GF, et al. Design and implementation of the North American Pediatric Cardiomyopathy Registry. Am Heart J 2000; 139: S86–S95.Google Scholar
38. Wilkinson, JD, Landy, DC, Colan, SD, et al. The pediatric cardiomyopathy registry and heart failure: key results from the first 15 years. Heart Fail Clin 2010; 6: 401–413.Google Scholar
39. Holman, WL. Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS): what have we learned and what will we learn? Circulation 2012; 126: 1401–1406.Google Scholar
40. Chen, JM, Richmond, ME, Charette, K, et al. A decade of pediatric mechanical circulatory support before and after cardiac transplantation. J Thorac Cardiov Surg 2012; 143: 344–351.Google Scholar
41. Extracorporeal Life Support Organization. ECLS Registry report. Extracorporeal Life Support Organzation, Ann Arbor, MI, 2015.Google Scholar
42. Rajagopal, SK, Almond, CS, Laussen, PC, Rycus, PT, Wypij, D, Thiagarajan, RR. Extracorporeal membrane oxygenation for the support of infants, children, and young adults with acute myocarditis: a review of the Extracorporeal Life Support Organization Registry. Crit Care Med 2010; 38: 382–387.Google Scholar
43. Thiagarajan, RR, Laussen, PC, Rycus, PT, Bartlett, RH, Bratton, SL. Extracorporeal membrane oxygenation to aid cardiopulmonary resuscitation in infants and children. Circulation 2007; 116: 1693–1700.Google Scholar