Skip to main content

Role of Multicenter Registries to Assess Outcomes of Fetal Interventions

  • Chapter
  • First Online:
  • 770 Accesses

Abstract

Health registries are databases that are managed by an organized network of centers that contribute clinical data for research purposes. Within these registries, analysts, researchers, and physicians work together to generate new knowledge from pooled data that may improve treatments, outcomes, and systems of care. By combining cases from multiple sources, health registries create larger pools of study data without the added expense of clinical trials. They provide sample populations that have superior variability and therefore may have better representation of larger populations. Because registries utilize aggregate data, they are ideal for studying rare diseases, complications, or adverse effects. Registries also provide a unique source of collaboration for the research community, as the creation of these multicenter partnerships requires extensive participation from experts across many disciplines.

This is a preview of subscription content, log in via an institution.

Buying options

Chapter
USD   29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD   149.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD   199.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD   199.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Learn about institutional subscriptions

References

  1. Grover FL, et al. The STS national database. Ann Thorac Surg. 2014;97(1):S48–54.

    Article  PubMed  Google Scholar 

  2. Head SJ, et al. The European association for cardio-thoracic surgery (EACTS) database: an introduction. Eur J Cardiothorac Surg. 2013;44(3):e175–80.

    Article  PubMed  Google Scholar 

  3. Murakami A, et al. The national clinical database as an initiative for quality improvement in Japan. Korean J Thorac Cardiovasc Surg. 2014;47(5):437–43.

    Article  PubMed  PubMed Central  Google Scholar 

  4. Moon-Grady AJ, et al. Outcomes after in-utero cardiac interventions: a preliminary report of the collaborative international fetal cardiac intervention registry. Circulation. 2014;130 Suppl 2:A16469.

    Google Scholar 

  5. Moon-Grady AJ, et al. International fetal cardiac intervention registry: a worldwide collaborative description and preliminary outcomes. J Am Coll Cardiol. 2015;66(4):388–99.

    Article  PubMed  Google Scholar 

  6. Jacobs JP, et al. Congenital heart surgery databases around the world: do we need a global database? In: Seminars in thoracic and cardiovascular surgery: pediatric cardiac surgery annual. 2010. Elsevier.

    Google Scholar 

  7. Makikallio K, et al. Fetal aortic valve stenosis and the evolution of hypoplastic left heart syndrome: patient selection for fetal intervention. Circulation. 2006;113(11):1401–5.

    Article  PubMed  Google Scholar 

  8. Clarke DR, et al. Verification of data in congenital cardiac surgery. Cardiol Young. 2008;18 Suppl 2:177–87.

    Article  PubMed  Google Scholar 

  9. Shahian DM, et al. The society of thoracic surgeons national database. Heart. 2013;99(20):1494–501.

    Article  PubMed  Google Scholar 

  10. O’Brien SM, et al. The society of thoracic surgeons congenital heart surgery database mortality risk model: part 1-statistical methodology. Ann Thorac Surg. 2015;100(3):1054–62.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Jacobs JP, et al. The society of thoracic surgeons congenital heart surgery database mortality risk model: part 2-clinical application. Ann Thorac Surg. 2015;100(3):1063–8.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Welke KF, Diggs BS, Karamlou T. Chance, bias, and confounding: threats to valid measurement of quality in the context of pediatric cardiac surgery. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu. 2010;13(1):79–83.

    Article  PubMed  Google Scholar 

  13. Mavroudis CD, et al. Ethical issues confronting outcomes analysis and quality assurance. In: Pediatric and congenital cardiac care. London: Springer; 2015. p. 295–303.

    Google Scholar 

  14. Pasquali SK, 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(6):1099–104.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Jacobs JP, et al. Linking the congenital heart surgery databases of the Society of Thoracic Surgeons and the Congenital Heart Surgeons’ Society: part 1 – rationale and methodology. World J Pediatr Congenit Heart Surg. 2014;5(2):256–71.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Jacobs JP, et al. Linking the congenital heart surgery databases of the Society of Thoracic Surgeons and the Congenital Heart Surgeons’ Society: part 2 – lessons learned and implications. World J Pediatr Congenit Heart Surg. 2014;5(2):272–82.

    Article  PubMed  PubMed Central  Google Scholar 

  17. Donofrio MT. The power is in the numbers: using collaboration and a data registry to answer our burning questions regarding fetal cardiac intervention. J Am Coll Cardiol. 2015;66(4):400–2.

    Article  PubMed  Google Scholar 

  18. Representatives U.S.H.o. Patient protection and affordable care act. Public Law. 2010:111–48.

    Google Scholar 

  19. United Healthcare. In utero fetal surgery. Medical Policy, 2015;2015T0035N:16.

    Google Scholar 

  20. Nisbet MC, Brossard D, Kroepsch A. Framing science the stem cell controversy in an age of press/politics. Int J Press/Politics. 2003;8(2):36–70.

    Article  Google Scholar 

  21. Sciences C.f.I.O.o.M. International ethical guidelines for biomedical research involving human subjects. Bulletin of medical ethics. 2002(182):17.

    Google Scholar 

  22. Drane JF. Medical ethics and maternal-fetal conflicts. Pa Med. 1992;95(7):12–6.

    CAS  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Anita J. Moon-Grady MD .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2016 Springer International Publishing Switzerland

About this chapter

Cite this chapter

Lodin, D., Karamlou, T., Moon-Grady, A.J. (2016). Role of Multicenter Registries to Assess Outcomes of Fetal Interventions. In: Butera, G., Cheatham, J., Pedra, C., Schranz, D., Tulzer, G. (eds) Fetal and Hybrid Procedures in Congenital Heart Diseases. Springer, Cham. https://doi.org/10.1007/978-3-319-40088-4_3

Download citation

  • DOI: https://doi.org/10.1007/978-3-319-40088-4_3

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-40086-0

  • Online ISBN: 978-3-319-40088-4

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics