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.
The early detection of cancer by screening has been shown to decrease both cancer incidence and cancer mortality and is an important part of primary care practice. There are several important issues to consider when screening for cancer. Are the treatments for cancer acceptable, feasible and effective and for patients in this age group? How often does screening lead to further evaluation, such as breast biopsy after mammography, which may prove unnecessary yet result in morbidity? Finally, does screening improve the quality of life and functional status of older adults? Cancer screening is an evolving technology, and therefore the role that psychologists will play can change with advances in biomedicine. One vital future direction is that the use of risk-strati?ed screening; potentially reducing harms by targeting screening to groups that stand to achieve more. Screening for certain types of cancer can decrease disease-related mortality. When making any decision about cancer screening, physicians must weigh the risks and benefits for each patient. These risks and benefits include factors such as co-morbid diseases and associated life expectancy, the feasibility of surgical intervention, the acceptability of cancer treatments, and, most important for the elderly, the effects of screening and the resulting diagnostic evaluations and therapies on the quality of life
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