Linking Databases

  • Sara K. PasqualiEmail author
  • Marshall L. Jacobs
  • Jeffrey P. Jacobs


Multicenter datasets are increasingly utilized in pediatric cardiovascular research. In this chapter, we discuss the rational for linking information across data sources, and describe different linkage mechanisms which enable analyses not possible with individual datasets alone.


Database Outcomes Congenital heart disease 


  1. 1.
    Pasquali SK, Hall M, Li JS, Peterson ED, Jaggers J, Lodge AJ, Marino BS, Goodman DM, Shah SS. Corticosteroids and outcome in children undergoing congenital heart surgery: analysis of the Pediatric Health Information Systems Database. Circulation. 2010;122:2123–30.PubMedCentralPubMedCrossRefGoogle Scholar
  2. 2.
    Fudge JC, Li S, Jaggers J, O’Brien SM, Peterson ED, Jacobs JP, Welke KF, Jacobs ML, Li JS, Pasquali SK. Outcomes in patients with Down syndrome undergoing congenital heart surgery: analysis of a national clinical database. Pediatrics. 2010;126:315–22.PubMedCentralPubMedCrossRefGoogle Scholar
  3. 3.
    Karamlou T, Hirsch J, Welke K, Ohye RG, Bove EL, Devaney EJ, Gajarski RJ. A United Network for Organ Sharing analysis of heart transplantation in adults with congenital heart disease: outcomes and factors associated with mortality and retransplantation. J Thorac Cardiovasc Surg. 2010;140:161–8.PubMedCrossRefGoogle Scholar
  4. 4.
    Pasquali SK, Jacobs JP, He X, Hornik CP, Jaquiss RDB, Jacobs ML, O’Brien SM, Peterson ED, Li JS. The complex relationship between center volume and outcome in patients undergoing the Norwood operation. Ann Thorac Surg. 2012;93:1556–62.PubMedCentralPubMedCrossRefGoogle Scholar
  5. 5.
    Welke KF, Diggs BS, Karamlou T, Ungerleider RM. The relationship between hospital surgical case volumes and mortality rates in pediatric cardiac surgery: an national sample, 1988–2005. Ann Thorac Surg. 2008;86:889–96.PubMedCrossRefGoogle Scholar
  6. 6.
    Jacobs JP, Jacobs ML, Mavroudis C, Lacour-Gayet FG, Tchervenkov CI, Pasquali SK. Executive summary: the Society of Thoracic Surgeons Congenital Heart Surgery Database – 18th Harvest – (January 1, 2009 – December 31, 2013). The Society of Thoracic Surgeons (STS) and Duke Clinical Research Institute (DCRI), Duke University Medical Center; Durham; 2013 Harvest.Google Scholar
  7. 7.
    Kugler JD, Beekman RH, Rosenthal GL, Jenkins KJ, Klitzner TS, Martin GR, Neish RS, Lannon C. Development of a pediatric cardiology quality improvement collaborative: from inception to implementation. From the Joint Council on Congenital Heart Disease Quality Improvement Task Force. Congenit Heart Dis. 2009;4:318–28.PubMedCrossRefGoogle Scholar
  8. 8.
    Pediatric Congenital Cardiac Surgery in New York State 2006–2009. Available at: Accessed 7/10/2013.
  9. 9.
    U.S. News & World Report’s Annual Ranking of Best Hospitals. Available at: Accessed 28 May 2013.
  10. 10.
    OptumHealth Congenital Heart Disease Center of Excellence. Available at: Accessed 28 May 2013.
  11. 11.
    Martin GR, Beekman RH, Ing FF, Jenkins KJ, McKay CR, Moore JW, Ringel RE, Rome JJ, Ruiz CE, Vincent RN. The IMPACT registry: improving pediatric and adult congenital treatments. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu. 2010;13:20–5.PubMedCrossRefGoogle Scholar
  12. 12.
    Pasquali SK, Peterson ED, Jacobs JP, He X, Li JS, Jacobs ML, Gaynor JW, Hirsch JC, Shah SS, Mayer JE. Differential case ascertainment in clinical registry vs. administrative data and impact on outcomes assessment in pediatric heart surgery. Ann Thorac Surg. 2013;95:197–203.PubMedCentralPubMedCrossRefGoogle Scholar
  13. 13.
    Pasquali SK, Jacobs JP, Shook GJ, O’Brien SM, Hall M, Jacobs ML, Welke KF, Gaynor JW, Peterson ED, Shah SS, Li JS. Linking clinical registry data with administrative data using indirect identifiers: implementation and validation in the congenital heart surgery population. Am Heart J. 2010;160:1099–104.PubMedCentralPubMedCrossRefGoogle Scholar
  14. 14.
    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;90:1150–7.PubMedCrossRefGoogle Scholar
  15. 15.
    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;92:32–7.PubMedCrossRefGoogle Scholar
  16. 16.
    Saleeb SF, Li WYV, Warren SZ, Lock JE. Effectiveness of screening for life-threatening chest pain in children. Pediatrics. 2011;128:e1062–8.PubMedCrossRefGoogle Scholar
  17. 17.
    Dokholyan RS, Muhlbaier LH, Falletta J, et al. Regulatory and ethical considerations for linking clinical and administrative databases. Am Heart J. 2009;157(6):971–82.PubMedCrossRefGoogle Scholar
  18. 18.
    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.PubMedCentralPubMedCrossRefGoogle Scholar
  19. 19.
    Pasquali SK, Li JS, He X, Jacobs ML, O’Brien SM, Hall M, Jaquiss RDB, Welke KF, Peterson ED, Shah SS, Gaynor JW, Jacobs JP. Perioperative methylprednisolone and outcome in neonates undergoing heart surgery. Pediatrics. 2012;129:e385–91.PubMedCentralPubMedCrossRefGoogle Scholar
  20. 20.
    Pasquali SK, Li JS, He X, Jacobs ML, O’Brien SM, Hall M, Jaquiss RDB, Welke KF, Peterson ED, Shah SS, Jacobs JP. Comparative analysis of antifibrinolytic medications in pediatric heart surgery. J Thorac Cardiovasc Surg. 2012;143:550–7.PubMedCentralPubMedCrossRefGoogle Scholar
  21. 21.
    Pasquali SK, He X, Jacobs ML, Hall M, Gaynor JW, Shah SS, Peterson ED, Hill KD, Li JS, Jacobs JP. Hospital variation in post-operative infection and outcome following congenital heart surgery. Ann Thorac Surg. 2013;96(2):657–63.PubMedCrossRefGoogle Scholar
  22. 22.
    Burstein DS, Jacobs JP, Sheng S, et al. Care models in congenital heart surgery and associated outcomes. Pediatrics. 2011;127:6.e1482–9.CrossRefGoogle Scholar
  23. 23.
    Gaies M, Jeffries H, Niebler R, Pasquali SK, Donohue J, Yu S, Thiagarajan R. 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
  24. 24.
    Jacobs JP, Jacobs ML, Austin EH, Mavroudis C, Pasquali SK, Lacour–Gayet FG, Tchervenkov CI, Bacha EA, del Nido PJ, Fraser CD, Gaynor JW, Hirsch JC, Morales DLS, Pourmoghadam KK, Tweddell JT, Prager RL, Mayer JE. Quality measures for congenital and pediatric cardiac surgery. World J Pediatr Congenit Heart Surg. 2012;3:32–47.PubMedCrossRefGoogle Scholar
  25. 25.
    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 2:124–9.PubMedCrossRefGoogle Scholar
  26. 26.
    Pearson GD, Kaltman JR, Lauer MS. Evidence-based medicine comes of age in pediatric cardiology. J Am Coll Cardiol. 2013;61:2565–7.PubMedCrossRefGoogle Scholar
  27. 27.
    Johnson SB, Whitney G, McAuliffe M. Using global unique identifiers to link autism collections. J Am Med Inform Assoc. 2010;17:689–95.PubMedCentralPubMedCrossRefGoogle Scholar

Copyright information

© Springer-Verlag London 2015

Authors and Affiliations

  • Sara K. Pasquali
    • 1
    Email author
  • Marshall L. Jacobs
    • 2
  • Jeffrey P. Jacobs
    • 3
    • 4
  1. 1.Department of Pediatrics, C.S. Mott Children’s HospitalUniversity of Michigan Congenital Heart CenterAnn ArborUSA
  2. 2.Division of Cardiac Surgery, Department of SurgeryJohns Hopkins School of MedicineBaltimoreUSA
  3. 3.Division of Cardiac Surgery, Department of SurgeryJohns Hopkins All Children’s Heart Institute, All Children’s Hospital and Florida Hospital for Children, Johns Hopkins UniversityTampa and OrlandoUSA
  4. 4.Division of Cardiac Surgery, Department of SurgeryJohns Hopkins UniversityBaltimoreUSA

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