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The study team has developed a novel Remote Temperature Monitoring (RTM) sensor which automatically uploads temperature data to the Cloud and integrates with both a clinician’s dashboard and an app on the caregiver’s cell phone to allow for real-time monitoring of CRO use.  This is the first study to attempt to validate the RTM sensor in a clinical setting.

The Preserving Kidney Function in Children With Chronic Kidney Disease (PRESERVE) study was designed to provide new knowledge to inform shared decision-making regarding blood pressure (BP) management for pediatric chronic kidney disease (CKD). PRESERVE compared the effectiveness of alternative strategies for monitoring and treating hypertension on preserving kidney function; expanded the National Patient-Centered Clinical Research Network (PCORnet) Common Data Model by adding pediatric- and kidney-specific variables and linking electronic health record data to other kidney disease databases; and assessed the lived experiences of patients related to BP management.

Participants were recruited from 15 clinical institutions across the United States. The research team analyzed electronic health record (EHR) data from 11,851 children with CKD and their caregivers to compare different ways to monitor and treat BP to preserve kidney function. In addition, a subset of patients and caregivers completed an online survey detailing patient-reported outcomes, such as fatigue, life satisfaction, pain levels, sleep disturbance, anxiety, and peer relationships (n=395).

Due to the risk of re-identification based on unique patterns in the individual-level PCORnet electronic health record (EHR) data, patient privacy regulations prohibit the public release of the individual-level data. This collection contains the code underlying the analysis; instructions, codesets, and output lists for the PCORnet queries; and the survey questionnaires for patients and family members.

Education is an essential part of childhood, and attending school is vital to community integration for children with special health care needs. These children continue to face significant barriers to obtaining a high-quality educational experience, despite decades of federal legislation designed to promote full inclusion and access to schools for everyone. Children with special health care needs often struggle with school functioning because chronic health problems increase the risk for lengthy illnesses and hospitalizations. Pediatric rehabilitation specialists assist these children and their families with the transition back to school after a health event. However, there is a lack of information available to help clinicians, families, and educators plan for the dynamic experience of disability as a child develops and interacts with the school environment. Healthcare providers need this information to evaluate their transition services from hospital to community and develop new interventions that can improve the educational success of these children over time. The purpose of this project was to engage former patients and their families to identify the school experiences and processes that affect their return to school, a key aspect of community integration, after medical rehabilitation. This study used focus groups with parents, former patients, and clinicians to understand the experience of return to school after pediatric rehabilitation, identify barriers and supports, and the impact on educational outcomes based on lived experience.

The COMBINE study was a longitudinal examination of pediatric Crohn's Disease (CD) patients in the United States with data collected from 2015-2022. This study was a randomized, double blind, placebo controlled pragmatic trial to compare low dose oral methotrexate versus a placebo in children with Crohn's disease initiating anti-TNF (tumor necrosis factor) therapy with Infliximab or Adalimumab. Eligible participants were randomized with a 1:1 allocation and followed for a minimum of 12 months and maximum of 36 months in the context of routine clinical care. The primary outcome was a composite of indicators of treatment failure and/or toxicity. Secondary outcomes included patient reported outcomes of pain interference and fatigue.

Crohn's disease (CD) is a chronic inflammatory bowel disease (IBD) that affects approximately 600,000 Americans with estimated direct costs of $3.6 billion annually. Typical symptoms (e.g., abdominal pain, bloody diarrhea) result in substantial morbidity, including hospitalization and surgery, missed work and school, and diminished quality of life. The primary treatment goals for all CD patients are to induce remission by eradicating intestinal inflammation and related symptoms and maintain remission by preventing disease flares and progression. Additional treatment goals for pediatric CD include restoring physical and emotional development.

These data are part of NACJD's Fast Track Release and are distributed as they were received from the data depositor. The files have been zipped by NACJD for release, but not checked or processed except for the removal of direct identifiers. Users should refer to the accompanying readme file for a brief description of the files available with this collection and consult the investigator(s) if further information is needed.

The study investigated the feasibility of implementing the Cardiff Model. The Cardiff Model is a unique violence surveillance system and intervention that involves data sharing and violence prevention planning between law enforcement and the medical field. Anonymized data on assaults from emergency and police departments (EDs; PDs) are combined to detail assault incidents and "hotspots." Data are discussed by a multidisciplinary consortium, which develops and implements a data-informed violence prevention action plan that includes behavioral, environmental, and policy changes to impact violence. Model actions led to decreases in injurious assaults and this model is now statutory in the United Kingdom.

The Cardiff Model has never been translated to the U.S. and would require an investigation within our health care system and in different geographical and population contexts. This study investigated the feasibility of essential Cardiff Model Components in order to refine study procedures and situate this community to request further funds for full model implementation.

As part of this study, researchers collected a number of feasibility measures from ED and study staff to evaluate the feasibility of translating included model components. Geospatial and statistical analyses investigated the added benefit of the combined ED, PD and Emergency Medical Services (EMS) data.

The study contains 1 SPSS data files (CHW Data_1.1.15 to 7.31.16.sav (n=748; 14 variables)), 1 STATA data file (nurse survey data.dta (n=43; 26 variables)), a text document (Nurse Survey_Qualitative data.txt), and 1 excel file (CHW Incidents_Block level data only.xlsx).

Objective: To meta-analyze the diagnostic efficiency of checklists for discriminating pediatric bipolar disorder (PBD) from other conditions. Hypothesized moderators included (a) informant - we predicted caregiver report would produce larger effects than youth or teacher report; (b) scale content - scales that include manic symptoms should be more discriminating; and (c) sample design - samples that include healthy control cases or impose stringent exclusion criteria are likely to produce inflated effect sizes.

Methods: Searches in PsycINFO, PubMed, and GoogleScholar generated 4094 hits. Inclusion criteria were (1) sufficient statistics to estimate a standardized effect size, (2) age 18 years or less, and (3) at least 10 cases (4) with diagnoses of PBD based on semi-structured diagnostic interview. Multivariate mixed regression models accounted for nesting of multiple effect sizes from different informants or scales within the same sample.

Results: Data included 63 effect sizes from 8 rating scales across 27 separate samples (N=11,941 youths, 1,834 with PBD). The average effect size was g=1.05. Random effect variance components within study and between study were significant, ps<.00005. Informant, scale content, and sample design all explained significant unique variance, even after controlling for design and reporting quality.

Discussion: Checklists have clinical utility for assessing PBD. Caregiver reports discriminated PBD significantly better than teacher and youth self report, although all three showed discriminative validity. Studies using "distilled" designs with healthy control comparison groups, or stringent exclusion criteria, produced significantly larger effect size estimates that could lead to inflated false positive rates if used as described in clinical practice.