Design and implementation of INSPPIRE.
OBJECTIVE
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.
Veronique D
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Morinville
Mark E
ME
Lowe
Monika
M
Ahuja
Bradley
B
Barth
Melena D
MD
Bellin
Heather
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Davis
Peter R
PR
Durie
Brian
B
Finley
Douglas S
DS
Fishman
Steven D
SD
Freedman
Cheryl E
CE
Gariepy
Matthew J
MJ
Giefer
Tanja
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Gonska
Melvin B
MB
Heyman
Ryan
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Himes
Sohail
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Husain
Soma
S
Kumar
Chee Y
CY
Ooi
John F
JF
Pohl
Sarah Jane
SJ
Schwarzenberg
David
D
Troendle
Steven L
SL
Werlin
Michael
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Wilschanski
Elizabeth
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Yen
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D000293:Adolescent; D035843:Biomedical Research / Q000379:methods / Q000458:organization & administration*; D002648:Child; D003628:Database Management Systems; D016208:Databases, Factual; D005260:Female; D006801:Humans; D007391:International Cooperation; D008297:Male; D010195:Pancreatitis / Q000453:epidemiology / Q000209:etiology / Q000628:therapy; D050500:Pancreatitis, Chronic / Q000453:epidemiology / Q000209:etiology / Q000628:therapy; D012008:Recurrence; D012042:Registries; D012107:Research Design; D011795:Surveys and Questionnaires