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. Lin & 13 others Quin Y. Liu, Jaimie D. Nathan, Sue J. Rhee, Chee Y. Ooi, Zachary M. Sellers, Sarah J Schwarzenberg, Jose Serrano, David M. Troendle, Steven L. Werlin, Michael Wilschanski, Yuhua Zheng, Ying Yuan, Mark E. Lowe

Research output: Contribution to journalArticle

5 Citations (Scopus)

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

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Chronic Pancreatitis
Pancreatic Neoplasms
Pancreatitis
Cohort Studies
Pediatrics
Databases
Israel
Natural History
Canada
Anxiety
History
Quality of Life
Demography
Depression
Psychology
Physicians
DNA
Population
Genes
Surveys and Questionnaires

Keywords

  • Children
  • pancreatitis
  • registry

PubMed: MeSH publication types

  • Journal Article
  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

Cite this

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

In: Pancreas, Vol. 47, No. 10, 01.11.2018, p. 1222-1228.

Research output: Contribution to journalArticle

Uc, A, Perito, ER, Pohl, JF, Shah, U, Abu-El-Haija, M, Barth, B, Bellin, MD, Ellery, KM, Fishman, DS, Gariepy, CE, Giefer, MJ, Gonska, T, Heyman, MB, Himes, RW, Husain, SZ, Maqbool, A, Mascarenhas, MR, McFerron, BA, Morinville, VD, Lin, TK, Liu, QY, Nathan, JD, Rhee, SJ, Ooi, CY, Sellers, ZM, Schwarzenberg, SJ, Serrano, J, Troendle, DM, Werlin, SL, Wilschanski, M, Zheng, Y, Yuan, Y & Lowe, ME 2018, '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', Pancreas, vol. 47, no. 10, pp. 1222-1228. https://doi.org/10.1097/MPA.0000000000001172
Uc, Aliye ; Perito, Emily R. ; Pohl, John F. ; Shah, Uzma ; Abu-El-Haija, Maisam ; Barth, Bradley ; Bellin, Melena D ; Ellery, Kate M. ; Fishman, Douglas S. ; Gariepy, Cheryl E. ; Giefer, Matthew J. ; Gonska, Tanja ; Heyman, Melvin B. ; Himes, Ryan W. ; Husain, Sohail Z. ; Maqbool, Asim ; Mascarenhas, Maria R. ; McFerron, Brian A. ; Morinville, Veronique D. ; Lin, Tom K. ; Liu, Quin Y. ; Nathan, Jaimie D. ; Rhee, Sue J. ; Ooi, Chee Y. ; Sellers, Zachary M. ; Schwarzenberg, Sarah J ; Serrano, Jose ; Troendle, David M. ; Werlin, Steven L. ; Wilschanski, Michael ; Zheng, Yuhua ; Yuan, Ying ; Lowe, Mark E. / 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. In: Pancreas. 2018 ; Vol. 47, No. 10. pp. 1222-1228.
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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.",
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AU - Perito, Emily R.

AU - Pohl, John F.

AU - Shah, Uzma

AU - Abu-El-Haija, Maisam

AU - Barth, Bradley

AU - Bellin, Melena D

AU - Ellery, Kate M.

AU - Fishman, Douglas S.

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AU - Husain, Sohail Z.

AU - Maqbool, Asim

AU - Mascarenhas, Maria R.

AU - McFerron, Brian A.

AU - Morinville, Veronique D.

AU - Lin, Tom K.

AU - Liu, Quin Y.

AU - Nathan, Jaimie D.

AU - Rhee, Sue J.

AU - Ooi, Chee Y.

AU - Sellers, Zachary M.

AU - Schwarzenberg, Sarah J

AU - Serrano, Jose

AU - Troendle, David M.

AU - Werlin, Steven L.

AU - Wilschanski, Michael

AU - Zheng, Yuhua

AU - Yuan, Ying

AU - Lowe, Mark E.

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