SARS-CoV-2 Antiviral Prescribing Gaps Among Nonhospitalized High-Risk Adults.

Within a multistate clinical cohort, SARS-CoV-2 antiviral prescribing patterns were evaluated from April 2022-June 2023 among nonhospitalized patients with SARS-CoV-2 with risk factors for severe COVID-19. Among 3247 adults, only 31.9% were prescribed an antiviral agent (87.6% nirmatrelvir/ritonavir, 11.9% molnupiravir, 0.5% remdesivir), highlighting the need to identify and address treatment barriers.

Clinical course and management of children with IgA vasculitis with nephritis.

BACKGROUND: IgA vasculitis is the most common vasculitis in children and is often complicated by acute nephritis (IgAVN). Risk of chronic kidney disease (CKD) among children with IgAVN remains unknown. This study aimed to describe the clinical management and kidney outcomes in a large cohort of children with IgAVN. METHODS: This observational cohort study used the PEDSnet database to identify children diagnosed with IgAV between January 1, 2009, and February 29, 2020. Demographic and clinical characteristics were compared among children with and without kidney involvement. For children followed by nephrology, clinical course, and management patterns were described. Patients were divided into four categories based on treatment: observation, renin-angiotensin-aldosterone system (RAAS) blockade, corticosteroids, and other immunosuppression, and outcomes were compared among these groups. RESULTS: A total of 6802 children had a diagnosis of IgAV, of whom 1139 (16.7%) were followed by nephrology for at least 2 visits over a median follow-up period of 1.7 years [0.4,4.2]. Conservative management was the most predominant practice pattern, consisting of observation in 57% and RAAS blockade in 6%. Steroid monotherapy was used in 29% and other immunosuppression regimens in 8%. Children receiving immunosuppression had higher rates of proteinuria and hypertension compared to those managed with observation (p < 0.001). At the end of follow-up, 2.6 and 0.5% developed CKD and kidney failure, respectively. CONCLUSIONS: Kidney outcomes over a limited follow-up period were favorable in a large cohort of children with IgAV. Immunosuppressive medications were used in those with more severe presentations and may have contributed to improved outcomes. A higher resolution version of the Graphical abstract is available as Supplementary information.

Standardizing electronic health record ventilation data in the pediatric long-term mechanical ventilator-dependent population.

BACKGROUND: Sharing data across institutions is critical to improving care for children who are using long-term mechanical ventilation (LTMV). Mechanical ventilation data are complex and poorly standardized. This lack of data standardization is a major barrier to data sharing. OBJECTIVE: We aimed to describe current ventilator data in the electronic health record (EHR) and propose a framework for standardizing these data using a common data model (CDM) across multiple populations and sites. METHODS: We focused on a cohort of patients with LTMV dependence who were weaned from mechanical ventilation (MV). We extracted and described relevant EHR ventilation data. We identified the minimum necessary components, termed "Clinical Ideas," to describe MV from time of initiation to liberation. We then utilized existing resources and partnered with informatics collaborators to develop a framework for incorporating Clinical Ideas into the PEDSnet CDM based on the Observational Medical Outcomes Partnership (OMOP). RESULTS: We identified 78 children with LTMV dependence who weaned from ventilator support. There were 25 unique device names and 28 unique ventilation mode names used in the cohort. We identified multiple Clinical Ideas necessary to describe ventilator support over time: device, interface, ventilation mode, settings, measurements, and duration of ventilation usage per day. We used Concepts from the SNOMED-CT vocabulary and integrated an existing ventilator mode taxonomy to create a framework for CDM and OMOP integration. CONCLUSION: The proposed framework standardizes mechanical ventilation terminology and may facilitate efficient data exchange in a multisite network. Rapid data sharing is necessary to improve research and clinical care for children with LTMV dependence.

Automated Ascertainment of Typhlitis From the Electronic Health Record.

PURPOSE: Adverse events (AEs) on Children's Oncology Group (COG) trials are manually ascertained using Common Terminology Criteria for Adverse Events. Despite significant effort, we previously demonstrated that COG typhlitis reporting sensitivity was only 37% when compared with gold standard physician chart abstraction. This study tested an automated typhlitis identification algorithm using electronic health record data. METHODS: Electronic health record data from children with leukemia age 0-22 years treated at a single institution from 2006 to 2019 were included. Patients were divided into derivation and validation cohorts. Rigorous chart abstraction of validation cohort patients established a gold standard AE data set. We created an automated algorithm to identify typhlitis matching Common Terminology Criteria for Adverse Events v5 that included antibiotics, neutropenia, and non-negated mention of typhlitis in a note. We iteratively refined the algorithm using the derivation cohort and then applied the algorithm to the validation cohort; performance was compared with the gold standard. For patients on trial AAML1031, COG AE report performance was compared with the gold standard. RESULTS: The derivation cohort included 337 patients. The validation cohort included 270 patients (961 courses). Chart abstraction identified 16 courses with typhlitis. The algorithm identified 37 courses with typhlitis; 13 were true positives (sensitivity 81.3%, positive predictive value 35.1%). For patients on AAML1031, chart abstraction identified nine courses with typhlitis, and COG reporting correctly identified 4 (sensitivity 44.4%, positive predictive value 100.0%). CONCLUSION: The automated algorithm identified true cases of typhlitis with higher sensitivity than COG reporting. The algorithm identified false positives but reduced the number of courses needing manual review by 96% (961 to 37) by detecting potential typhlitis. This algorithm could provide a useful screening tool to reduce manual effort required for typhlitis AE reporting.

Skeletal Outcomes in Children and Young Adults with Glomerular Disease.

BACKGROUND: Children with glomerular disease have unique risk factors for compromised bone health. Studies addressing skeletal complications in this population are lacking. METHODS: This retrospective cohort study utilized data from PEDSnet, a national network of pediatric health systems with standardized electronic health record data for more than 6.5 million patients from 2009 to 2021. Incidence rates (per 10,000 person-years) of fracture, slipped capital femoral epiphysis (SCFE), and avascular necrosis/osteonecrosis (AVN) in 4598 children and young adults with glomerular disease were compared with those among 553,624 general pediatric patients using Poisson regression analysis. The glomerular disease cohort was identified using a published computable phenotype. Inclusion criteria for the general pediatric cohort were two or more primary care visits 1 year or more apart between 1 and 21 years of age, one visit or more every 18 months if followed >3 years, and no chronic progressive conditions defined by the Pediatric Medical Complexity Algorithm. Fracture, SCFE, and AVN were identified using SNOMED-CT diagnosis codes; fracture required an associated x-ray or splinting/casting procedure within 48 hours. RESULTS: We found a higher risk of fracture for the glomerular disease cohort compared with the general pediatric cohort in girls only (incidence rate ratio [IRR], 1.6; 95% CI, 1.3 to 1.9). Hip/femur and vertebral fracture risk were increased in the glomerular disease cohort: adjusted IRR was 2.2 (95% CI, 1.3 to 3.7) and 5 (95% CI, 3.2 to 7.6), respectively. For SCFE, the adjusted IRR was 3.4 (95% CI, 1.9 to 5.9). For AVN, the adjusted IRR was 56.2 (95% CI, 40.7 to 77.5). CONCLUSIONS: Children and young adults with glomerular disease have significantly higher burden of skeletal complications than the general pediatric population.

Rates of laboratory adverse events by course in paediatric leukaemia ascertained with automated electronic health record extraction: a retrospective cohort study from the Children's Oncology Group.

BACKGROUND: Adverse events are often misreported in clinical trials, leading to an incomplete understanding of toxicities. We aimed to test automated laboratory adverse event ascertainment and grading (via the ExtractEHR automated package) to assess its scalability and define adverse event rates for children with acute myeloid leukaemia and acute lymphoblastic leukaemia. METHODS: For this retrospective cohort study from the Children's Oncology Group (COG), we included patients aged 0-22 years treated for acute myeloid leukaemia or acute lymphoblastic leukaemia at Children's Healthcare of Atlanta (Atlanta, GA, USA) from Jan 1, 2010, to Nov 1, 2018, at the Children's Hospital of Philadelphia (Philadelphia, PA, USA) from Jan 1, 2011, to Dec 31, 2014, and at the Texas Children's Hospital (Houston, TX, USA) from Jan 1, 2011, to Dec 31, 2014. The ExtractEHR automated package acquired, cleaned, and graded laboratory data as per Common Terminology Criteria for Adverse Events (CTCAE) version 5 for 22 commonly evaluated grade 3-4 adverse events (fatal events were not evaluated) with numerically based CTCAE definitions. Descriptive statistics tabulated adverse event frequencies. Adverse events ascertained by ExtractEHR were compared to manually reported adverse events for patients enrolled in two COG trials (AAML1031, NCT01371981; AALL0932, NCT02883049). Analyses were restricted to protocol-defined chemotherapy courses (induction I, induction II, intensification I, intensification II, and intensification III for acute myeloid leukaemia; induction, consolidation, interim maintenance, delayed intensification, and maintenance for acute lymphoblastic leukaemia). FINDINGS: Laboratory adverse event data from 1077 patients (583 from Children's Healthcare of Atlanta, 200 from the Children's Hospital of Philadelphia, and 294 from the Texas Children's Hospital) who underwent 4611 courses (549 for acute myeloid leukaemia and 4062 for acute lymphoblastic leukaemia) were extracted, processed, and graded. Of the 166 patients with acute myeloid leukaemia, 86 (52%) were female, 80 (48%) were male, 96 (58%) were White, and 132 (80%) were non-Hispanic. Of the 911 patients with acute lymphoblastic leukaemia, 406 (45%) were female, 505 (55%) were male, 596 (65%) were White, and 641 (70%) were non-Hispanic. Patients with acute myeloid leukaemia had the most adverse events during induction I and intensification II. Hypokalaemia (one [17%] of six to 75 [48%] of 156 courses) and alanine aminotransferase (ALT) increased (13 [10%] of 134 to 27 [17%] of 156 courses) were the most prevalent non-haematological adverse events in patients with acute myeloid leukaemia, as identified by ExtractEHR. Patients with acute lymphoblastic leukaemia had the greatest number of adverse events during induction and maintenance (eight adverse events with prevalence ≥10%; induction and maintenance: anaemia, platelet count decreased, white blood cell count decreased, neutrophil count decreased, lymphocyte count decreased, ALT increased, and hypocalcaemia; induction: hypokalaemia; maintenance: aspartate aminotransferase [AST] increased and blood bilirubin increased), as identified by ExtractEHR. 187 (85%) of 220 total comparisons in 22 adverse events in four AAML1031 and six AALL0923 courses were substantially higher with ExtractEHR than COG-reported adverse event rates for adverse events with a prevalence of at least 2%. INTERPRETATION: ExtractEHR is scalable and accurately defines laboratory adverse event rates for paediatric acute leukaemia; moreover, ExtractEHR seems to detect higher rates of laboratory adverse events than those reported in COG trials. These rates can be used for comparisons between therapies and to counsel patients treated on or off trials about the risks of chemotherapy. ExtractEHR-based adverse event ascertainment can improve reporting of laboratory adverse events in clinical trials. FUNDING: US National Institutes of Health, St Baldrick's Foundation, and Alex's Lemonade Stand Foundation.

Surgical insights and management in patients with the 22q11.2 deletion syndrome.

PURPOSE: 22q11.2 deletion syndrome (22q11.2DS) can present with a variety challenges to patients and their caregivers, many of which require surgical evaluation and intervention. Surgical needs can also extend long into adulthood, prompting evaluation and intervention throughout development and beyond. Here, we identify common concerns and patient needs associated with the 22q11.2DS from a general surgery perspective, their management, and typical management based on our institution's experience with 1263 patients. METHODS: 1263 patients evaluated and treated at the 22q And You Center at the Children's Hospital of Philadelphia were enrolled and included in the study, from January 1992 to May 2017 Co-morbidities, procedures, and imaging studies performed were quantified and assessed via descriptive analysis. RESULTS: Gastroesophageal reflux disease (GERD) and feeding difficulties were the most common surgical issues identified, while gastrostomy tube placement, anorectal procedures, and hernia repairs were the most common surgical interventions performed by general surgeons. CONCLUSIONS: General surgical procedures are commonly needed in this population and are part of the complex needs these patients and their surgeons may encounter in the setting of a 22q11.2DS diagnosis. These findings will help to inform a well-coordinated, multidisciplinary approach to care.

Severity of Acute COVID-19 in Children <18 Years Old March 2020 to December 2021.

This national study evaluated trends in illness severity among 82 798 children with coronavirus disease 2019 from March 1, 2020, to December 30, 2021.

Incidence and risk factors for hypoglycemia during maintenance chemotherapy in pediatric acute lymphoblastic leukemia.

BACKGROUND: Fasting hypoglycemia is a recognized occurrence among pediatric patients with acute lymphoblastic leukemia (ALL) during maintenance therapy. Existing publications describing this finding are limited to small studies and case reports. Our objective was to determine the incidence of hypoglycemia during maintenance chemotherapy and to investigate the association of age, as well as other potential risk factors, with this outcome in pediatric patients with ALL. PROCEDURE: This retrospective cohort study included individuals 1 to 21 years of age with ALL treated with antimetabolite-containing maintenance chemotherapy at a large children's hospital between January 2011 and December 2014. The primary endpoint was time to first documented episode of hypoglycemia during maintenance therapy, defined as single measurement of plasma glucose <60 mg/dL. Cox regression was used to evaluate the association with age and identify other potential risk factors. RESULTS: We identified 126 eligible patients, of whom 63% were documented as White, non-Hispanic, 28% as non-White, non-Hispanic, and 9% as Hispanic. Twenty-eight children (22%) had documented hypoglycemia during maintenance therapy. Younger age at the start of maintenance and hepatotoxicity documented during chemotherapy prior to maintenance initiation were associated with hypoglycemia (adjusted HR age = 0.88; 95% CI, 0.78-0.99; adjusted HR prior hepatotoxicity = 3.50; 95% CI, 1.47-8.36). CONCLUSIONS: Nearly one quarter of children in our cohort had hypoglycemia documented during maintenance chemotherapy. Younger age at maintenance initiation and hepatotoxicity during chemotherapy prior to maintenance initiation emerged as risk factors. These findings highlight the importance of counseling about the risk of, and monitoring for, hypoglycemia, particularly in young children.

Assessment of 135 794 Pediatric Patients Tested for Severe Acute Respiratory Syndrome Coronavirus 2 Across the United States.

Importance: There is limited information on severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) testing and infection among pediatric patients across the United States. Objective: To describe testing for SARS-CoV-2 and the epidemiology of infected patients. Design, Setting, and Participants: A retrospective cohort study was conducted using electronic health record data from 135 794 patients younger than 25 years who were tested for SARS-CoV-2 from January 1 through September 8, 2020. Data were from PEDSnet, a network of 7 US pediatric health systems, comprising 6.5 million patients primarily from 11 states. Data analysis was performed from September 8 to 24, 2020. Exposure: Testing for SARS-CoV-2. Main Outcomes and Measures: SARS-CoV-2 infection and coronavirus disease 2019 (COVID-19) illness. Results: A total of 135 794 pediatric patients (53% male; mean [SD] age, 8.8 [6.7] years; 3% Asian patients, 15% Black patients, 11% Hispanic patients, and 59% White patients; 290 per 10 000 population [range, 155-395 per 10 000 population across health systems]) were tested for SARS-CoV-2, and 5374 (4%) were infected with the virus (12 per 10 000 population [range, 7-16 per 10 000 population]). Compared with White patients, those of Black, Hispanic, and Asian race/ethnicity had lower rates of testing (Black: odds ratio [OR], 0.70 [95% CI, 0.68-0.72]; Hispanic: OR, 0.65 [95% CI, 0.63-0.67]; Asian: OR, 0.60 [95% CI, 0.57-0.63]); however, they were significantly more likely to have positive test results (Black: OR, 2.66 [95% CI, 2.43-2.90]; Hispanic: OR, 3.75 [95% CI, 3.39-4.15]; Asian: OR, 2.04 [95% CI, 1.69-2.48]). Older age (5-11 years: OR, 1.25 [95% CI, 1.13-1.38]; 12-17 years: OR, 1.92 [95% CI, 1.73-2.12]; 18-24 years: OR, 3.51 [95% CI, 3.11-3.97]), public payer (OR, 1.43 [95% CI, 1.31-1.57]), outpatient testing (OR, 2.13 [1.86-2.44]), and emergency department testing (OR, 3.16 [95% CI, 2.72-3.67]) were also associated with increased risk of infection. In univariate analyses, nonmalignant chronic disease was associated with lower likelihood of testing, and preexisting respiratory conditions were associated with lower risk of positive test results (standardized ratio [SR], 0.78 [95% CI, 0.73-0.84]). However, several other diagnosis groups were associated with a higher risk of positive test results: malignant disorders (SR, 1.54 [95% CI, 1.19-1.93]), cardiac disorders (SR, 1.18 [95% CI, 1.05-1.32]), endocrinologic disorders (SR, 1.52 [95% CI, 1.31-1.75]), gastrointestinal disorders (SR, 2.00 [95% CI, 1.04-1.38]), genetic disorders (SR, 1.19 [95% CI, 1.00-1.40]), hematologic disorders (SR, 1.26 [95% CI, 1.06-1.47]), musculoskeletal disorders (SR, 1.18 [95% CI, 1.07-1.30]), mental health disorders (SR, 1.20 [95% CI, 1.10-1.30]), and metabolic disorders (SR, 1.42 [95% CI, 1.24-1.61]). Among the 5374 patients with positive test results, 359 (7%) were hospitalized for respiratory, hypotensive, or COVID-19-specific illness. Of these, 99 (28%) required intensive care unit services, and 33 (9%) required mechanical ventilation. The case fatality rate was 0.2% (8 of 5374). The number of patients with a diagnosis of Kawasaki disease in early 2020 was 40% lower (259 vs 433 and 430) than in 2018 or 2019. Conclusions and Relevance: In this large cohort study of US pediatric patients, SARS-CoV-2 infection rates were low, and clinical manifestations were typically mild. Black, Hispanic, and Asian race/ethnicity; adolescence and young adulthood; and nonrespiratory chronic medical conditions were associated with identified infection. Kawasaki disease diagnosis is not an effective proxy for multisystem inflammatory syndrome of childhood.

Breaking the myths of competition: a cross-sectional analysis of injuries among CrossFit trained participants.

OBJECTIVES: The purpose of this study was to examine the injury rates of individuals engaged in CrossFit training and examine the risk of injury associated with competition. STUDY DESIGN: Cross-sectional analysis. METHODS: Descriptive statistics, including injury incidence and rates, were examined for individuals reporting participation in a CrossFit sanctioned competition between 2013 and 2017. To examine the odds of being injured, we considered logistic regression models, where the primary independent measure was participation length-individual measures of interest included age, sex, body mass index, CrossFit affiliation and competition status. RESULTS: 3049 individuals completed the survey (60% completion rate). All competitors, regardless of competition level, had similar incidence of injury (χ2=1.1, p=0.571). For those who reported competing, our calculated injury rate was 0.21-0.54 injuries per 1000 training hours, while for those not competing, the injury rate was calculated as 0.39-1.30 injuries per 1000 training hours. Logistic regression demonstrated short length of participation in CrossFit training as the main factor associated with the odds of being injured (OR=1.82; 95% CI: 1.15 to 2.92). Additionally, training at an official CrossFit affiliate appeared to have a protective effect from injury (OR=0.85; 95% CI: 0.65, 1.10). CONCLUSION: Our findings provide evidence of the low risk of injury related to these events. Moreover, these findings support the notion that musculoskeletal injuries may be the result of poor progression plans, which may be minimised by participating in an official CrossFit affiliate.

Standardizing Clinical Diagnoses: Evaluating Alternate Terminology Selection.

In most electronic health record (EHR) systems, clinicians record diagnoses using interface terminologies, such as Intelligent Medical Objects (IMO). When extracting data from EHRs for collaborative research, local codes are often transformed to standard terminologies for consistent analyses despite the potential for loss of fidelity. EHR diagnosis codes may be standardized directly during the Extract-Transform-Load (ETL) process to the "Meaningful Use" clinical data exchange standard, SNOMED-CT, or to the International Classification of Diseases (ICD) terminologies commonly used for billing. We examined the performance of ETL standardization via the direct IMO mapping to SNOMED-CT, and via IMO mapping to ICD-9-CM or ICD-10-CM followed by UMLS mapping to SNOMED-CT. We found that for both ICD-9-CM and ICD-10-CM, only 24-27% of diagnosis codes map to the same SNOMED-CT code selected by the direct IMO-SNOMED crosswalk. We identified that differences in mapping lead to loss in the granularity and laterality of the initial diagnosis.

Design and Refinement of a Data Quality Assessment Workflow for a Large Pediatric Research Network.

BACKGROUND: Clinical data research networks (CDRNs) aggregate electronic health record data from multiple hospitals to enable large-scale research. A critical operation toward building a CDRN is conducting continual evaluations to optimize data quality. The key challenges include determining the assessment coverage on big datasets, handling data variability over time, and facilitating communication with data teams. This study presents the evolution of a systematic workflow for data quality assessment in CDRNs. IMPLEMENTATION: Using a specific CDRN as use case, the workflow was iteratively developed and packaged into a toolkit. The resultant toolkit comprises 685 data quality checks to identify any data quality issues, procedures to reconciliate with a history of known issues, and a contemporary GitHub-based reporting mechanism for organized tracking. RESULTS: During the first two years of network development, the toolkit assisted in discovering over 800 data characteristics and resolving over 1400 programming errors. Longitudinal analysis indicated that the variability in time to resolution (15day mean, 24day IQR) is due to the underlying cause of the issue, perceived importance of the domain, and the complexity of assessment. CONCLUSIONS: In the absence of a formalized data quality framework, CDRNs continue to face challenges in data management and query fulfillment. The proposed data quality toolkit was empirically validated on a particular network, and is publicly available for other networks. While the toolkit is user-friendly and effective, the usage statistics indicated that the data quality process is very time-intensive and sufficient resources should be dedicated for investigating problems and optimizing data for research.

Anomalies of the genitourinary tract in children with 22q11.2 deletion syndrome.

The 22q11.2 deletion syndrome (22q11.2DS) involves multiple organ systems with variable phenotypic expression. Genitourinary tract abnormalities have been noted to be present in up to 30-40% of patients. At our institution, an internationally recognized, comprehensive, and multidisciplinary 22q11.2DS care center has been providing care to these children. We sought to report on the incidence of genitourinary tract anomalies in this large cohort and, therefore, retrospectively reviewed all patients who underwent a complete evaluation from 1992 to March 2017. We identified all children with any genital or urinary tract anomaly. For all children with a diagnosis of hydronephrosis, the underlying etiology was determined, when possible. Overall, 1,073 of 1,267 children with 22q11.2DS underwent renal evaluations at our institution. Hundered Sixty-Two (15.1%) children had structural abnormalities of their kidneys/urinary tracts. The majority of children with hydronephrosis (63%) had isolated upper tract dilation without any additional diagnoses. Boys were significantly more likely to be diagnosed with a genital abnormality than girls (7.7 vs. 0.5%, p < 0.001). Of the 649 boys in the entire cohort, 24 (3.7%) had cryptorchidism and 24 (3.7%) had hypospadias, which was noted to be mild in all except one boy. Overall, findings of hydronephrosis, unilateral renal agenesis, and multicystic dysplastic kidney occur at higher rates than expected in the general population. Given these findings, in addition to routine physical examination, we believe that all patients with 22q11.2DS warrant screening RBUS at time of diagnosis.

A 4-Year Analysis of the Incidence of Injuries Among CrossFit-Trained Participants.

BACKGROUND: High-intensity functional training (HIFT) is a new training modality that merges high-intensity exercise with functional (multijoint) movements. Even though others exist, CrossFit training has emerged as the most common form of HIFT. Recently, several reports have linked CrossFit training to severe injuries and/or life-threatening conditions, such as rhabdomyolysis. Empirical evidence regarding the safety of this training modality is currently limited. PURPOSE: To examine the incidence of injuries related to CrossFit participation and to estimate the rate of injuries in a large cross-sectional convenience sample of CrossFit participants from around the world. STUDY DESIGN: Descriptive epidemiology study. METHODS: A total of 3049 participants who reported engaging in CrossFit training between 2013 and 2017 were surveyed. RESULTS: A portion (30.5%) of the participants surveyed reported experiencing an injury over the previous 12 months because of their participation in CrossFit training. Injuries to the shoulders (39%), back (36%), knees (15%), elbows (12%), and wrists (11%) were most common for both male and female participants. The greatest number of injuries occurred among those who participated in CrossFit training 3 to 5 days per week (χ2 = 12.51; P = .0019). Overall, and based on the assumed maximum number of workout hours per week, the injury rate was 0.27 per 1000 hours (females: 0.28; males: 0.26), whereas the assumed minimum number of workout hours per week resulted in an injury rate of 0.74 per 1000 hours (females: 0.78; males: 0.70). CONCLUSION: Our findings suggest that CrossFit training is relatively safe compared with more traditional training modalities. However, it seems that those within their first year of training as well as those who engage in this training modality less than 3 days per week and/or participate in less than 3 workouts per week are at a greater risk for injuries.

Predicting Causes of Data Quality Issues in a Clinical Data Research Network.

Clinical data research networks (CDRNs) invest substantially in identifying and investigating data quality problems. While identification is largely automated, the investigation and resolution are carried out manually at individual institutions. In the PEDSnet CDRN, we found that only approximately 35% of the identified data quality issues are resolvable as they are caused by errors in the extract-transform-load (ETL) code. Nonetheless, with no prior knowledge of issue causes, partner institutions end up spending significant time investigating issues that represent either inherent data characteristics or false alarms. This work investigates whether the causes (ETL, Characteristic, or False alarm) can be predicted before spending time investigating issues. We trained a classifier on the metadata from 10,281 real-world data quality issues, and achieved a cause prediction F1-measure of up to 90%. While initially tested on PEDSnet, the proposed methodology is applicable to other CDRNs facing similar bottlenecks in handling data quality results.

Clinical and Prognostic Significance of Cerebrospinal Fluid Opening and Closing Pressures in Pediatric Pseudotumor Cerebri Syndrome.

BACKGROUND: The purpose of this study was to determine the prognostic utility of closing pressure and volume of cerebrospinal fluid removed with respect to papilledema resolution and headache improvement in pediatric pseudotumor cerebri syndrome. METHODS: This is a retrospective observational study of 93 children with definite pseudotumor cerebri syndrome. The primary outcome measure was time to resolution of papilledema, and the secondary outcome measure was time to resolution of headache. RESULTS: There were no significant differences in gender, age, or body mass index z score observed between subjects with (N = 35) and without (N = 58) documented closing pressure. The median time to resolution of papilledema was not statistically different between children above or equal to and those below the median closing pressure (170 mm of cerebrospinal fluid, n = 31, P = 0.391) or the volume of median cerebrospinal fluid removed (16 mL, n = 19, P = 0.155). There was no statistically significant difference detected in days of headache between the children with opening pressure above and equal to the median (400 mm of cerebrospinal fluid) and the children with opening pressure below the median (n = 44, P = 0.634). CONCLUSIONS: No significant association between closing pressure, amount of cerebrospinal fluid removed, and time to resolution of papilledema due to pseudotumor cerebri syndrome was detected. The diagnostic and therapeutic purposes of either measuring the closing pressure or maximizing the volume of cerebrospinal fluid removed were not evident in these analyses.

Pediatric healthcare costs for patients with 22q11.2 deletion syndrome.

BACKGROUND: The 22q11.2 deletion syndrome is a variably expressed disorder that can include cardiac, palate, and other physical abnormalities, immunodeficiency, and hypocalcemia. Because of the extreme variability in phenotype, there has been no available estimate of the total medical expenditure associated with the average case. METHODS: We have developed a model to estimate the cost from the time of diagnosis to age 20. Costs were based on patients seen at a specialty center but also considered those components of care expected to have been provided by external healthcare facilities. Expense was based on billed medical charges extracted from the electronic medical billing system for all patients with a diagnosis of DiGeorge or velocardiofacial syndrome from 1993-2015. Expenditures included maternal prenatal care directly related to an affected pregnancy, molecular/cytogenetic diagnosis, consultations, surgery, and/or other treatment and management. Most mental health services (except inpatient), therapy related to cognitive, behavioral, speech, pharmacy, and nonmedical costs (special education, vocational, respite, lost earnings) were not included. RESULTS: Data were available for 642 patients with 50.7% diagnosed prenatally or in the first year of life. The average cost for a patient was $727,178. Costs were highest for patients ascertained prenatally ($2,599,955) or in the first year of life ($1,043,096), those with cardiac abnormalities or referred for cardiac evaluation ($751,535), and patients with low T-cell counts ($1,382,222). CONCLUSION: This study demonstrates that there are significant medical costs associated with 22q11.2 deletion syndrome.

A longitudinal analysis of data quality in a large pediatric data research network.

OBJECTIVE: PEDSnet is a clinical data research network (CDRN) that aggregates electronic health record data from multiple children's hospitals to enable large-scale research. Assessing data quality to ensure suitability for conducting research is a key requirement in PEDSnet. This study presents a range of data quality issues identified over a period of 18 months and interprets them to evaluate the research capacity of PEDSnet. MATERIALS AND METHODS: Results were generated by a semiautomated data quality assessment workflow. Two investigators reviewed programmatic data quality issues and conducted discussions with the data partners' extract-transform-load analysts to determine the cause for each issue. RESULTS: The results include a longitudinal summary of 2182 data quality issues identified across 9 data submission cycles. The metadata from the most recent cycle includes annotations for 850 issues: most frequent types, including missing data (>300) and outliers (>100); most complex domains, including medications (>160) and lab measurements (>140); and primary causes, including source data characteristics (83%) and extract-transform-load errors (9%). DISCUSSION: The longitudinal findings demonstrate the network's evolution from identifying difficulties with aligning the data to a common data model to learning norms in clinical pediatrics and determining research capability. CONCLUSION: While data quality is recognized as a critical aspect in establishing and utilizing a CDRN, the findings from data quality assessments are largely unpublished. This paper presents a real-world account of studying and interpreting data quality findings in a pediatric CDRN, and the lessons learned could be used by other CDRNs.