DESIGN AND IMPLEMENTATION OF INSPPIRE (INTERNATIONAL STUDY GROUP OF PEDIATRIC PANCREATITIS: IN SEARCH FOR A CURE)

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 Schwarzenberg; David Troendle; Steven L Werlin; Michael Wilschanski; Elizabeth Yen; Aliye Uc

doi:10.1097/MPG.0000000000000417

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DESIGN AND IMPLEMENTATION OF INSPPIRE (INTERNATIONAL STUDY GROUP OF PEDIATRIC PANCREATITIS: IN SEARCH FOR A CURE)

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DESIGN AND IMPLEMENTATION OF INSPPIRE (INTERNATIONAL STUDY GROUP OF PEDIATRIC PANCREATITIS: IN SEARCH FOR A CURE)

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, …

Journal of pediatric gastroenterology and nutrition, Vol.59(3), pp.360-364

09/2014

DOI: 10.1097/MPG.0000000000000417

PMCID: PMC4141003

PMID: 24824361

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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.

registry

database

questionnaire

chronic pancreatitis

children

acute recurrent pancreatitis

Details

Title: Subtitle: DESIGN AND IMPLEMENTATION OF INSPPIRE (INTERNATIONAL STUDY GROUP OF PEDIATRIC PANCREATITIS: IN SEARCH FOR A CURE)
Creators: Veronique D Morinville - Montreal Children’s Hospital, McGill University, Montreal, QC, Canada
Mark E Lowe - Children’s Hospital of Pittsburgh, Pittsburgh, PA
Monika Ahuja - University of Iowa Children’s Hospital (UICH), Iowa City, IA
Bradley Barth - University of Texas Southwestern Medical School, Dallas, TX
Melena D Bellin - University of Minnesota, Amplatz Children’s Hospital, Minneapolis, Minnesota
Heather Davis - University of Iowa
Peter R Durie - Hospital for Sick Children and University of Toronto, Toronto, ON, Canada
Brian Finley - University of Iowa Children’s Hospital (UICH), Iowa City, IA
Douglas S Fishman - Baylor College of Medicine, Houston, TX
Steven D Freedman - Beth Israel Deaconess Medical Center, Boston, MA
Cheryl E Gariepy - Nationwide Children’s Hospital (NCH), Columbus, OH
Matthew J Giefer - Seattle Children’s Hospital, Seattle, WA
Tanja Gonska - Hospital for Sick Children and University of Toronto, Toronto, ON, Canada
Melvin B Heyman - University of California at San Francisco, San Francisco, CA
Ryan Himes - Baylor College of Medicine, Houston, TX
Sohail Husain - Children’s Hospital of Pittsburgh, Pittsburgh, PA
Soma Kumar - Nationwide Children’s Hospital (NCH), Columbus, OH
Chee Y Ooi - University of New South Wales and Sydney Children’s Hospital Randwick, Sydney, Australia
John F Pohl - University of Utah, Salt Lake City, UT
Sarah Jane Schwarzenberg - University of Minnesota, Amplatz Children’s Hospital, Minneapolis, Minnesota
David Troendle - University of Texas Southwestern Medical School, Dallas, TX
Steven L Werlin - Medical College of Wisconsin, Milwaukee, WI
Michael Wilschanski - Montreal Children’s Hospital, McGill University, Montreal, QC, Canada
Elizabeth Yen - University of California at San Francisco, San Francisco, CA
Aliye Uc - University of Iowa Children’s Hospital (UICH), Iowa City, IA
Resource Type: Journal article
Publication Details: Journal of pediatric gastroenterology and nutrition, Vol.59(3), pp.360-364
DOI: 10.1097/MPG.0000000000000417
PMID: 24824361
PMCID: PMC4141003
NLM abbreviation: J Pediatr Gastroenterol Nutr
ISSN: 0277-2116
eISSN: 1536-4801
Grant note: DOI: 10.13039/100000002, name: National Institutes of Health, award: DK096327 (AU)
Language: English
Date published: 09/2014
Academic Unit: Stead Family Department of Pediatrics; Radiation Oncology; Gastroenterology, Hepatology, Pancreatology, and Nutrition
Record Identifier: 9984047761602771

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