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Design and implementation of INSPPIRE.

Veronique D Morinville1, Mark E Lowe, Monika Ahuja

  • 1*Montreal Children's Hospital, McGill University, Montreal, Canada †Children's Hospital of Pittsburgh, Pittsburgh, PA ‡University of Iowa Children's Hospital (UICH), Iowa City §University of Texas Southwestern Medical School, Dallas ||University of Minnesota, Amplatz Children's Hospital, Minneapolis ¶The Hospital for Sick Children and University of Toronto, Toronto, Canada #Baylor College of Medicine, Houston, TX **Beth Israel Deaconess Medical Center, Boston, MA ††Nationwide Children's Hospital (NCH), Columbus, OH ‡‡Seattle Children's Hospital, Seattle, WA §§University of California at San Francisco ||||University of New South Wales and Sydney Children's Hospital, Randwick, Australia ¶¶University of Utah, Salt Lake City ##Hadassah Hebrew University Medical Center, Jerusalem, Israel.

Journal of Pediatric Gastroenterology and Nutrition
|May 15, 2014
PubMed
Summary

The INSPPIRE consortium successfully established a multicenter registry for studying rare pediatric pancreatitis (acute recurrent pancreatitis and chronic pancreatitis). This approach is feasible and will enhance understanding and treatment of these childhood diseases.

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Area of Science:

  • Pediatric Gastroenterology
  • Clinical Research
  • Epidemiology

Background:

  • Acute recurrent pancreatitis (ARP) and chronic pancreatitis (CP) are uncommon and poorly understood in children.
  • A structured, multicenter data collection is essential for advancing knowledge of pediatric pancreatitis.

Purpose of the Study:

  • To establish the International Study Group of Pediatric Pancreatitis: In Search for a Cure (INSPPIRE) consortium.
  • To investigate the epidemiology, etiologies, pathogenesis, natural history, and outcomes of pediatric ARP and CP.

Main Methods:

  • Developed and utilized patient and physician questionnaires to gather comprehensive data.
  • Transferred data from paper questionnaires into Research Electronic Data Capture (REDCap) for analysis.
  • Established an administrative structure and secured National Institutes of Health funding for the consortium.

Main Results:

  • The INSPPIRE consortium successfully enrolled 194 children between September 2012 and August 2013 across 14 international sites.
  • Data collection involved detailed information on demographics, medical history, risk factors, and treatments.
  • The study included a diverse pediatric population, with 54% girls, 82% non-Hispanic, and 72% white participants.

Conclusions:

  • The INSPPIRE consortium demonstrates the feasibility of creating a multicenter patient registry for rare pediatric pancreatitis.
  • Collected data will significantly improve the understanding of pediatric pancreatitis.
  • This multicenter approach will facilitate future therapeutic interventional studies for childhood pancreatitis.