Open AccessDesign and Implementation of INSPPIRE
Author(s) -
Morinville Veronique D.,
Lowe Mark E.,
Ahuja Monika,
Barth Bradley,
Bellin Melena D.,
Davis Heather,
Durie Peter R.,
Finley Brian,
Fishman Douglas S.,
Freedman Steven D.,
Gariepy Cheryl E.,
Giefer Matthew J.,
Gonska Tanja,
Heyman Melvin B.,
Himes Ryan,
Husain Sohail,
Kumar Soma,
Ooi Chee Y.,
Pohl John F.,
Schwarzenberg Sarah Jane,
Troendle David,
Werlin Steven L.,
Wilschanski Michael,
Yen Elizabeth,
Uc Aliye
Publication year - 2014
Publication title -
journal of pediatric gastroenterology and nutrition
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.206
H-Index - 131
eISSN - 1536-4801
pISSN - 0277-2116
DOI - 10.1097/mpg.0000000000000417
Subject(s) - medicine , epidemiology , demographics , multicenter study , pediatrics , family medicine , etiology , pancreatitis , acute pancreatitis , demography , randomized controlled trial , sociology
Objectives: 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 In ternational S tudy Group of P ediatric P ancreatitis: I n Search for a Cu re (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.