Design and Implementation of INSPPIRE

Abstract

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 multi-center, structured, data collection approach. Methods The INSPPIRE Consortium (INternational Study Group of Pediatric Pancreatitis: In search for a cuRE) 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, past 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 REDCap™ (Research Electronic Data Capture), tabulated and analyzed. Results The administrative structure of the INSPPIRE Consortium was established and National Institutes of Health funding was obtained. Fourteen sites (10 in 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, 194 children were enrolled into the study; 54 % were female; 82% were non-Hispanic, 72% were Caucasian. Conclusions The INSPPIRE consortium demonstrates the feasibility of building a multi-center 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 multi-center approach.

Direct Costs of Acute Recurrent and Chronic Pancreatitis in Children in the INSPPIRE Registry

“…Patient and physician questionnaires employed in the INSPPIRE database have been described (17). Patient questionnaires queried emergency department visits, hospitalizations, and medication used for pain.…”

EPC/HPSG evidence-based guidelines for the management of pediatric pancreatitis

“…In the INSPPIRE cohort, one-third of children with CP reported taking narcotics for their pain 129 . In a survey to analyze the practice of pediatric gastroenterologists who commonly treat children with CP, 75% reported providing narcotics for CP-related pain, with 50% also prescribing centrally acting agents, such as gabapentin 139 .…”

Acute Pancreatitis Patient Registry to Examine Novel Therapies in Clinical Experience (Apprentice): An International Multicenter Consortium for the Study of Acute Pancreatitis

“…A similar approach has been taken by the INSPPIRE group to advance the understanding of pediatric pancreatitis [16]. Their initial work has yielded several lessons useful for other international pancreatitis collaborations.…”

“…Detailed web-based questionnaires were then developed to prospectively capture information on demographics, etiology, pancreatitis history, comorbidities, risk factors, severity biomarkers, severity indices, health-care utilization, management strategies, and outcomes of AP patients. INSPPIRE) [15,16]. The University of Pittsburgh has led this initiative from the beginning and serves as the coordinating center.…”

“…REDCap is a frequently used program for clinical, basic, and translational research [16,21]. This novel software allows collaborative access to data across different centers around the world.…”