scholarly journals Enroller Experience and Parental Familiarity of Disease Influence Participation in a Pediatric Trial

2021 ◽  
Vol 22 (5) ◽  
pp. 1176-1182
Author(s):  
Jeff Schunk ◽  
Kammy Jacobsen ◽  
Dilon Stephens ◽  
Amy Watson ◽  
Cody Olsen ◽  
...  
Keyword(s):  
Glycemic Control ◽  
Disease Process ◽  
Pediatric Emergency ◽  
Research Network ◽  
Insurance Status ◽  
Parental Permission ◽  
Pediatric Trial ◽  
Pediatric Emergency Care ◽  
Diagnosed Diabetes ◽  
New Onset

Introduction: Acquiring parental consent is critical to pediatric clinical research, especially in interventional trials. In this study we investigated demographic, clinical, and environmental factors associated with likelihood of parental permission for enrollment in a study of therapies for diabetic ketoacidosis (DKA) in children. Methods: We analyzed data from patients and parents who were approached for enrollment in the Pediatric Emergency Care Applied Research Network (PECARN) Fluid Therapies Under Investigation in DKA (FLUID) trial at one major participating center. We determined the influence of various factors on patient enrollment, including gender, age, distance from home to hospital, insurance status, known vs new onset of diabetes, glycemic control (hemoglobin A1c), DKA severity, gender of the enroller, experience of the enroller, and time of enrollment. Patients whose parents consented to participate were compared to those who declined participation using bivariable and multivariable analyses controlling for the enroller. Results: A total of 250 patient/parent dyads were approached; 177 (71%) agreed to participate, and 73 (29%) declined. Parents of patients with previous episodes of DKA agreed to enroll more frequently than those with a first DKA episode (94.3% for patients with 1-2 previous DKA episodes, 92.3% for > 2 previous episodes, vs 64.9% for new onset diabetes and 63.2% previously diagnosed but no previous DKA). Participation was also more likely with more experienced enrollers (odds ratio [95% confidence interval] of participation for an enroller with more than two years’ experience vs less than two years: 2.46 [1.53, 3.97]). After adjusting for demographic and clinical factors, significant associations between participation and both DKA history and enroller experience remained. Patient age, gender, distance of home from hospital, glycemic control, insurance status, and measures of DKA severity were not associated with likelihood of participation. Conclusion: Familiarity with the disease process (previously diagnosed diabetes and previous experience with DKA) and experience of the enroller favorably influenced the likelihood of parental permission for enrollment in a study of DKA in children.

The Pediatric Emergency Care Applied Research Network and Knowledge Translation

2018 ◽  
Vol 19 (3) ◽  
pp. 295-303 ◽  
Author(s):  
Rachel M. Stanley ◽  
Mona Jabbour ◽  
Jessica M. Saunders ◽  
Sally Jo Zuspan
Keyword(s):  
Knowledge Translation ◽  
Emergency Care ◽  
Applied Research ◽  
Pediatric Emergency ◽  
Research Network ◽  
Pediatric Emergency Care

scholarly journals Pediatric Emergency Care Applied Research Network head injuryprediction rules: on the basis of cost and effectiveness

2017 ◽  
Vol 47 ◽  
pp. 1770-1777 ◽  
Author(s):  
Fatma Dilek GÖKHARMAN ◽  
Sonay AYDIN ◽  
Erdem FATİHOĞLU ◽  
Pınar Nercis KOŞAR
Keyword(s):  
Emergency Care ◽  
Applied Research ◽  
Pediatric Emergency ◽  
Research Network ◽  
Pediatric Emergency Care

scholarly journals The Pediatric Emergency Care Applied Research Network Registry: A Multicenter Electronic Health Record Registry of Pediatric Emergency Care

2018 ◽  
Vol 09 (02) ◽  
pp. 366-376 ◽  
Author(s):  
Sara Deakyne Davies ◽  
Robert Grundmeier ◽  
Diego Campos ◽  
Katie Hayes ◽  
Jamie Bell ◽  
...  
Keyword(s):  
Electronic Health Record ◽  
Data Quality ◽  
Emergency Care ◽  
Data Model ◽  
Applied Research ◽  
Pediatric Emergency ◽  
Research Network ◽  
Health Record ◽  
Pediatric Emergency Care ◽  
Central Data

Background Electronic health record (EHR)-based registries allow for robust data to be derived directly from the patient clinical record and can provide important information about processes of care delivery and patient health outcomes. Methods A data dictionary, and subsequent data model, were developed describing EHR data sources to include all processes of care within the emergency department (ED). ED visit data were deidentified and XML files were created and submitted to a central data coordinating center for inclusion in the registry. Automated data quality control occurred prior to submission through an application created for this project. Data quality reports were created for manual data quality review. Results The Pediatric Emergency Care Applied Research Network (PECARN) Registry, representing four hospital systems and seven EDs, demonstrates that ED data from disparate health systems and EHR vendors can be harmonized for use in a single registry with a common data model. The current PECARN Registry represents data from 2,019,461 pediatric ED visits, 894,503 distinct patients, more than 12.5 million narrative reports, and 12,469,754 laboratory tests and continues to accrue data monthly. Conclusion The Registry is a robust harmonized clinical registry that includes data from diverse patients, sites, and EHR vendors derived via data extraction, deidentification, and secure submission to a central data coordinating center. The data provided may be used for benchmarking, clinical quality improvement, and comparative effectiveness research.

scholarly journals Identification of practically important traumatic brain injury using Pediatric Emergency Care Applied Research Network rule in children younger than 2 years with minor head trauma

2020 ◽  
pp. 102490792097537
Author(s):  
Jon Soo Kim ◽  
Jin Cheol Kim ◽  
Won Young Sung
Keyword(s):  
Traumatic Brain Injury ◽  
Emergency Department ◽  
Brain Injury ◽  
Head Trauma ◽  
Emergency Care ◽  
Applied Research ◽  
Pediatric Emergency ◽  
Research Network ◽  
Minor Head Trauma ◽  
Pediatric Emergency Care

Background: Minor head trauma is frequently presented to the pediatric emergency department. Despite the burden this injury poses on public health, evidence-based clinical guidelines on the assessment and management of pediatric minor head trauma remain unestablished, particularly in children below 2 years. We aimed to assess the diagnostic accuracy of a clinical decision rule (Pediatric Emergency Care Applied Research Network rule) and physician discretion in the recognition of practically important traumatic brain injury in children below 2 years of age presenting with minor head trauma to the emergency department. Methods: The medical records of children younger than 2 years presenting with head trauma to the emergency department were reviewed with Glasgow Coma Scale scores of 14–15. Practically important traumatic brain injury is a clinically essential traumatic brain injury including all cranial abnormalities (e.g. skull fracture) detected by computed tomography. All predictor variables of the Pediatric Emergency Care Applied Research Network rule and practically important traumatic brain injury outcomes were validated. Results: We enrolled and analyzed 433 children below 2 years. The most frequently observed mechanisms of injury in decreasing order were as follows: falls > 90 cm, head struck by high-impact objects, slip down, and automobile traffic accident. Of 224 children, positive findings were observed in 35 and 144 had one or more predictors of Pediatric Emergency Care Applied Research Network rule. The sensitivity, specificity, and negative likelihood ratio of the Pediatric Emergency Care Applied Research Network rule for practically important traumatic brain injury were 94.3%, 41.3%, and 0.14, respectively. Conclusion: The Pediatric Emergency Care Applied Research Network rule would assist in clinical decision-making to appropriately detect potential head injuries in children below 2 years, thereby reducing unnecessary performance of computed tomography scan.

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