INternational Study Group of Pediatric Pancreatitis: In Search for a CuRE Cohort Study: Design and Rationale for INSPPIRE 2 From the Consortium for the Study of Chronic Pancreatitis, Diabetes, and Pancreatic Cancer

被引:31
|
作者
Uc, Aliye [1 ]
Perito, Emily R. [2 ]
Pohl, John F. [3 ]
Shah, Uzma [4 ]
Abu-El-Haija, Maisam [5 ]
Barth, Bradley [6 ]
Bellin, Melena D. [7 ]
Ellery, Kate M. [8 ]
Fishman, Douglas S. [9 ]
Gariepy, Cheryl E. [10 ]
Giefer, Matthew J. [11 ]
Gonska, Tanja [12 ]
Heyman, Melvin B. [2 ]
Himes, Ryan W. [9 ]
Husain, Sohail Z. [8 ]
Maqbool, Asim [13 ]
Mascarenhas, Maria R. [13 ]
McFerron, Brian A. [14 ]
Morinville, Veronique D. [15 ]
Lin, Tom K. [5 ]
Liu, Quin Y. [16 ]
Nathan, Jaimie D. [17 ]
Rhee, Sue J. [2 ]
Ooi, Chee Y. [18 ,19 ]
Sellers, Zachary M. [20 ]
Schwarzenberg, Sarah Jane [7 ]
Serrano, Jose [21 ]
Troendle, David M. [6 ]
Werlin, Steven L. [22 ]
Wilschanski, Michael [23 ]
Zheng, Yuhua [24 ]
Yuan, Ying [25 ]
Lowe, Mark E. [26 ]
机构
[1] Univ Iowa, Stead Family Childrens Hosp, Stead Family Dept Pediat, Iowa City, IA USA
[2] Univ Calif San Francisco, Dept Pediat, San Francisco, CA USA
[3] Univ Utah, Dept Pediat, Salt Lake City, UT USA
[4] Harvard Med Sch, Massachusetts Gen Hosp Children, Dept Pediat, Boston, MA USA
[5] Cincinnati Childrens Hosp Med Ctr, Dept Pediat, Cincinnati, OH 45229 USA
[6] Univ Texas Southwestern Med Ctr Dallas, Dept Pediat, Dallas, TX USA
[7] Univ Minnesota, Dept Pediat, Mason Childrens Hosp, Minneapolis, MN 55455 USA
[8] Childrens Hosp Pittsburgh, Dept Pediat, Pittsburgh, PA 15213 USA
[9] Baylor Coll Med, Dept Pediat, Houston, TX 77030 USA
[10] Nationwide Childrens Hosp, Dept Pediat, Columbus, OH USA
[11] Seattle Childrens Hosp, Dept Pediat, Seattle, WA USA
[12] Hosp Sick Children, Dept Pediat, Toronto, ON, Canada
[13] Childrens Hosp Philadelphia, Dept Pediat, Philadelphia, PA 19104 USA
[14] Indiana Univ Sch Med, Riley Hosp Children, Dept Pediat, Indianapolis, IN 46202 USA
[15] McGill Univ, Montreal Childrens Hosp, Dept Pediat, Montreal, PQ, Canada
[16] Cedars Sinai Med Ctr, Dept Pediat & Med, Los Angeles, CA 90048 USA
[17] Cincinnati Childrens Hosp Med Ctr, Div Pediat Gen & Thorac Surg, Cincinnati, OH 45229 USA
[18] Univ New South Wales, Dept Pediat, Sch Womens & Childrens Hlth, Med, Sydney, NSW, Australia
[19] Sydney Childrens Hosp, Sydney, NSW, Australia
[20] Stanford Univ, Dept Pediat, Stanford, CA 94305 USA
[21] NIDDK, Div Digest Dis & Nutr, Bethesda, MD 20892 USA
[22] Med Coll Wisconsin, Dept Pediat, 8701 Watertown Plank Rd, Milwaukee, WI 53226 USA
[23] Hadassah Hebrew Univ Hosp, Dept Pediat, Jerusalem, Israel
[24] Childrens Hosp Los Angeles, Dept Pediat, Los Angeles, CA 90027 USA
[25] Univ Texas MD Anderson Canc Ctr, Dept Biostat, Houston, TX 77030 USA
[26] Washington Univ, Sch Med, Dept Pediat, St Louis, MO 63110 USA
基金
美国国家卫生研究院;
关键词
Children; registry; pancreatitis; METABOLIC RISK-FACTORS; ACUTE RECURRENT; CHANGING INCIDENCE; ETIOLOGIC FACTORS; GENE-MUTATIONS; CHILDREN; DIAGNOSIS;
D O I
10.1097/MPA.0000000000001172
中图分类号
R57 [消化系及腹部疾病];
学科分类号
摘要
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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页码:1222 / 1228
页数:7
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