Design and Implementation of INSPPIRE

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

Journal of Pediatric Gastroenterology & Nutrition: September 2014 - Volume 59 - Issue 3 - p 360–364
doi: 10.1097/MPG.0000000000000417
Original Articles: Gastroenterology

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.

*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.

Address correspondence and reprint requests to Aliye Uc, MD, 2865 JPP Pediatrics, University of Iowa, 200 Hawkins Drive, Iowa City, IA 52242 (e-mail: aliye-uc@uiowa.edu).

Received 7 January, 2014

Accepted 24 April, 2014

Drs Veronique D. Morinville and Mark E. Lowe contributed equally to the present article.

Supplemental digital content is available for the present article. Direct URL citations appear in the printed text, and links to the digital files are provided in the HTML text of the present article on the journal's Web site (www.jpgn.org).

The work was supported by National Institutes of Health grant no. DK096327 (AU), CTSA 2UL1 TR000442-06, and REDCap. This publication's contents are solely the responsibility of the authors and do not necessarily represent the official views of the National Institutes of Health.

The authors report no conflicts of interest.

© 2014 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,