International study group of pediatric pancreatitis: In search for a Cu RE cohort study: Design and rationale for INSPPIRE 2 from the consortium for the study of chronic pancreatitis, diabetes, and pancreatic cancer

Aliye Uc, Emily R. Perito, John F. Pohl, Uzma Shah, Maisam Abu-El-Haija, Bradley Barth, Melena D. Bellin, Kate M. Ellery, Douglas S. Fishman, Cheryl E. Gariepy, Matthew J. Giefer, Tanja Gonska, Melvin B. Heyman, Ryan W. Himes, Sohail Z. Husain, Asim Maqbool, Maria R. Mascarenhas, Brian A. McFerron, Veronique D. Morinville, Tom K. LinQuin Y. Liu, Jaimie D. Nathan, Sue J. Rhee, Chee Y. Ooi, Zachary M. Sellers, Sarah Jane Schwarzenberg, Jose Serrano, David M. Troendle, Steven L. Werlin, Michael Wilschanski, Yuhua Zheng, Ying Yuan, Mark E. Lowe

Research output: Contribution to journalArticlepeer-review

38 Scopus citations

Abstract

We created the INternational Study Group of Pediatric Pancreatitis: In Search for a CuRE (INSPPIRE 2) cohort to study the risk factors, natural history, and outcomes of pediatric acute recurrent pancreatitis and chronic pancreatitis (CP). Patient and physician questionnaires collect information on demographics, clinical history, family and social history, and disease outcomes. Health-related quality of life, depression, and anxiety are measured using validated questionnaires. Information entered on paper questionnaires is transferred into a database managed by Consortium for the Study of Chronic Pancreatitis, Diabetes, and Pancreatic Cancer's Coordinating and Data Management Center. Biosamples are collected for DNA isolation and analysis of most common pancreatitis-associated genes. Twenty-two sites (18 in the United States, 2 in Canada, and 1 each in Israel and Australia) are participating in the INSPPIRE 2 study. These sites have enrolled 211 subjects into the INSPPIRE 2 database toward our goal to recruit more than 800 patients in 2 years. The INSPPIRE 2 cohort study is an extension of the INSPPIRE cohort study with a larger and more diverse patient population. Our goals have expanded to include evaluating risk factors for CP, its sequelae, and psychosocial factors associated with pediatric acute recurrent pancreatitis and CP.

Original languageEnglish (US)
Pages (from-to)1222-1228
Number of pages7
JournalPancreas
Volume47
Issue number10
DOIs
StatePublished - Nov 1 2018

Bibliographical note

Publisher Copyright:
© 2018 Wolters Kluwer Health, Inc. All rights reserved.

Keywords

  • Children
  • pancreatitis
  • registry

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