Design and implementation of INSPPIRE

Veronique D. Morinville, Mark E. Lowe, Monika Ahuja, Bradley Barth, Melena D. Bellin, Heather Davis, Peter R. Durie, Brian Finley, Douglas S. Fishman, Steven D. Freedman, Cheryl E. Gariepy, Matthew J. Giefer, Tanja Gonska, Melvin B. Heyman, Ryan Himes, Sohail Husain, Soma Kumar, Chee Y. Ooi, John F. Pohl, Sarah Jane SchwarzenbergDavid Troendle, Steven L. Werlin, Michael Wilschanski, Elizabeth Yen, Aliye Uc

Research output: Contribution to journalArticlepeer-review

35 Scopus citations

Abstract

OBJECTIVES: Acute recurrent pancreatitis (ARP) and chronic pancreatitis (CP) are rare and poorly understood diseases in children. Better understanding of these disorders can only be accomplished via a multicenter, structured, data collection approach. METHODS: The International Study Group of Pediatric Pancreatitis: In Search for a Cure (INSPPIRE) consortium was created to investigate the epidemiology, etiologies, pathogenesis, natural history, and outcomes of pediatric ARP and CP. Patient and physician questionnaires were developed to capture information on demographics, medical history, family and social history, medications, hospitalizations, risk factors, diagnostic evaluation, treatments, and outcome information. Information collected in paper questionnaires was then transferred into Research Electronic Data Capture (REDCap), tabulated, and analyzed. RESULTS: The administrative structure of the INSPPIRE consortium was established, and National Institutes of Health funding was obtained. A total of 14 sites (10 in the United States, 2 in Canada, and 2 overseas) participated. Questionnaires were amended and updated as necessary, followed by changes made into the REDCap database. Between September 1, 2012 and August 31, 2013, a total of 194 children were enrolled into the study: 54% were girls, 82% were non-Hispanic, and 72% were whites. CONCLUSIONS: The INSPPIRE consortium demonstrates the feasibility of building a multicenter patient registry to study the rare pediatric diseases, ARP and CP. Analyses of collected data will provide a greater understanding of pediatric pancreatitis and create opportunities for therapeutic interventional studies that would not otherwise be possible without a multicenter approach.

Original languageEnglish (US)
Pages (from-to)360-364
Number of pages5
JournalJournal of pediatric gastroenterology and nutrition
Volume59
Issue number3
DOIs
StatePublished - Sep 2014

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Gastroenterology

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