Design and implementation of INSPPIRE.

Autor: Morinville VD; 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., Lowe ME, Ahuja M, Barth B, Bellin MD, Davis H, Durie PR, Finley B, Fishman DS, Freedman SD, Gariepy CE, Giefer MJ, Gonska T, Heyman MB, Himes R, Husain S, Kumar S, Ooi CY, Pohl JF, Schwarzenberg SJ, Troendle D, Werlin SL, Wilschanski M, Yen E, Uc A
Jazyk: angličtina
Zdroj: Journal of pediatric gastroenterology and nutrition [J Pediatr Gastroenterol Nutr] 2014 Sep; Vol. 59 (3), pp. 360-4.
DOI: 10.1097/MPG.0000000000000417
Abstrakt: 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 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.
Databáze: MEDLINE
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