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INternational Study Group of Pediatric Pancreatitis: In Search for a CuRE Cohort Study

Uc, Aliye, MD*; Perito, Emily R., MD; Pohl, John F., MD; Shah, Uzma, MBBS§; Abu-El-Haija, Maisam, MD; Barth, Bradley, MD; Bellin, Melena D., MD#; Ellery, Kate M., DO**; Fishman, Douglas S., MD††; Gariepy, Cheryl E., MD‡‡; Giefer, Matthew J., MD§§; Gonska, Tanja, MD∥∥; Heyman, Melvin B., MD, MPH; Himes, Ryan W., MD††; Husain, Sohail Z., MD**; Maqbool, Asim, MD¶¶; Mascarenhas, Maria R., MD¶¶; McFerron, Brian A., MD##; Morinville, Veronique D., MD***; Lin, Tom K., MD; Liu, Quin Y., MD†††; Nathan, Jaimie D., MD‡‡‡; Rhee, Sue J., MD; Ooi, Chee Y., MBBS, PhD§§§; Sellers, Zachary M., MD, PhD∥∥∥; Schwarzenberg, Sarah Jane, MD#; Serrano, Jose, MD, PhD¶¶¶; Troendle, David M., MD; Werlin, Steven L., MD###; Wilschanski, Michael, MBBS****; Zheng, Yuhua, MS, MD††††; Yuan, Ying, PhD‡‡‡‡; Lowe, Mark E., MD, PhD§§§§ on behalf of the Consortium for the Study of Chronic Pancreatitis, Diabetes, and Pancreatic Cancer (CPDPC)

doi: 10.1097/MPA.0000000000001172
CPDPC Conference Reports

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.

From the *Stead Family Department of Pediatrics, University of Iowa, Stead Family Children's Hospital, Iowa City, IA;

Department of Pediatrics, University of California San Francisco, San Francisco, CA;

Department of Pediatrics, University of Utah, Salt Lake City, UT;

§Department of Pediatrics, Massachusetts General Hospital for Children, Harvard Medical School, Boston, MA;

Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH;

Department of Pediatrics, University of Texas Southwestern Medical School, Dallas, TX;

#Department of Pediatrics, University of Minnesota Masonic Children's Hospital, Minneapolis, MN;

**Department of Pediatrics, Children's Hospital of Pittsburgh, Pittsburgh, PA;

††Department of Pediatrics, Baylor College of Medicine, Houston, TX;

‡‡Department of Pediatrics, Nationwide Children's Hospital, Columbus, OH;

§§Department of Pediatrics, Seattle Children's Hospital, Seattle, WA;

∥∥Department of Pediatrics, Hospital for Sick Children, Toronto, Canada;

¶¶Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA;

##Department of Pediatrics, Riley Hospital for Children, Indiana University School of Medicine, Indianapolis, IN;

***Department of Pediatrics, Montreal Children's Hospital, McGill University, Montreal, Canada;

†††Department of Pediatrics and Medicine, Cedars-Sinai Medical Center, Los Angeles, CA;

‡‡‡Division of Pediatric General and Thoracic Surgery, Cincinnati Children's Hospital Medical Center, Cincinnati, OH;

§§§Department of Pediatrics, School of Women's and Children's Health, Medicine, University of New South Wales and Sydney Children's Hospital, Sydney, Australia;

∥∥∥Department of Pediatrics, Stanford University, Stanford, CA;

¶¶¶Division of Digestive Diseases and Nutrition, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), Bethesda, MD;

###Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI;

****Department of Pediatrics, Hadassah Hebrew University Hospital, Jerusalem, Israel;

††††Department of Pediatrics, Children's Hospital Los Angeles, Los Angeles, CA;

‡‡‡‡Department of Biostatistics, The University of Texas, MD Anderson Cancer Center, Houston, TX; and

§§§§Department of Pediatrics, Washington University School of Medicine, St Louis, MO.

Received for publication July 26, 2018; accepted August 24, 2018.

Address correspondence to: Aliye Uc, MD, Stead Family Department of Pediatrics, University of Iowa Health Care, 200 Hawkins Dr, BT 1120-C, Iowa City, IA 52242 (e-mail: aliye-uc@uiowa.edu).

Research reported in this publication was supported by National Cancer Institute and the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health under award numbers R21DK096327, R01DK097820, U01DK108334, U01DK108300, U01DK108327, U01DK108326, U01DK108323, U01DK108328, U01DK108314, and U01DK108300. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Dr Mark Lowe is on the Board of Directors of the National Pancreas Foundation and receives royalties from Millipore Inc and UpToDate. Drs Tanja Gonska and Michael Wilschanski received a research grant from Vertex Pharmaceuticals. Dr Sohail Husain owns equity in PrevCon. Dr John Pohl is on the speaker's bureau for Medical Education Resources, Inc. Dr Melena Bellin is a consultant for AbbVie Inc and ARIEL Precision Medicine. Dr Aliye Uc is a member of American Board of Pediatrics, Subboard of Pediatric Gastroenterology. The other authors declare no conflicts of interest.

All authors are responsible for reported research. They have participated in the concept and design; collection, analysis, and interpretation of data; writing and revising of the manuscript; and decision to submit the manuscript for publication.

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