Completeness Of Case Ascertainment Research Articles

Expanding the Massachusetts Birth Defects Monitoring Program to include additional pregnancy outcomes: Programmatic efforts and impacts on case ascertainment, 2012-2020.

Birth defects affect 1 in 33 infants in the United States and are a leading cause of infant mortality. Birth defects surveillance is crucial for informing public health action. The Massachusetts Birth Defects Monitoring Program (MBDMP) began collecting other pregnancy losses (OPLs) in 2011, including miscarriages (<20 weeks gestation) or elective terminations (any gestational age), in addition to live births and stillbirths (≥20 weeks gestation). We describe programmatic changes for adding OPLs and their impact on prevalence estimates. Using population-based, statewide, data from the MBDMP (2012-2020), we assessed prevalence per 10,000 live births and 95% confidence intervals (CIs) with and without OPLs overall and for specific birth defects by time period, maternal age, and race/ethnicity. Including OPLs required amending a state statute and promulgating regulations, new data sources, and additional data processing, cleaning, and verification. Overall prevalence with OPLs increased from 257.4 (95% CI: 253.5-261.4) to 333.9 (95% CI: 329.4-338.4) per 10,000; increases were observed in all time periods, age, and race/ethnicity groups. After including OPLs, the prevalence increased for neural tube defects [3.2 (2.7-3.6) to 8.3 (7.6-9.0)], and trisomies 13 [0.5 (0.3-0.7) to 4.1 (3.6-4.6)], 18 [1.5 (1.2-1.9) to 8.2 (7.5-8.9)], and 21 [12.3 (11.4-13.2) to 28.9 (27.6-30.2)]. Cardiovascular defects increased slightly, while prevalence of eye/ear, respiratory, and gastrointestinal defects remained similar. Adding OPLs required substantial programmatic efforts and resulted in more complete case ascertainment, particularly for certain birth defects. More complete case ascertainment will allow for improved research, screening, and resource allocation.

Maternal and Infant Antibiotic and Acid Suppressant Use and Risk of Eosinophilic Esophagitis

Eosinophilic esophagitis (EoE), a chronic disease with significant patient and health care burden, has increased rapidly in incidence across many countries. Elucidating risk factors for disease development is a priority for health care practitioners and patients. To evaluate the association of maternal and infant use of antibiotics and acid suppressants with the development of EoE. This was a population-based, case-control study of pediatric EoE (1996-2019) in Denmark using pathology, prescription, birth, inpatient, and outpatient health registry data and with complete ascertainment of all EoE cases among Danish residents born between 1997 and 2018. Study data were analyzed from September 2020 to August 2023. Maternal and infant use of antibiotics and acid suppressants, examining medication class, timing, and frequency of use. Development of EoE. Included in the study was a total of 392 cases and 3637 sex- and year of birth-matched controls with a median (IQR) age of 11.0 (6.0-15.0) years, 2772 male individuals (68.8%), and 1257 female individuals (31.2%). Compared with children with no antibiotic prescriptions filled during infancy, those with any use of an antibiotic had an associated 40% increase in risk of EoE (adjusted odds ratio [aOR], 1.4; 95% CI, 1.1-1.7). Those with 3 or more prescriptions had an associated 80% increase in risk of EoE (aOR, 1.8; 95% CI, 1.3-2.5). Frequency of maternal antibiotic use was associated with an increased risk (1 prescription: aOR, 1.4; 95% CI, 1.0-1.8; 3≤ prescriptions: aOR, 2.1; 95% CI, 1.4-3.2). Risk was highest for use in the third trimester and in the first 6 months from birth. Any acid suppressant use in infancy was associated with increased risk of EoE (aOR, 15.9; 95% CI, 9.1-27.7). Restriction of cases to those diagnosed at 5 years or older yielded similar results (aOR, 11.6; 95% CI, 5.5-24.8). For maternal use, 3 or more prescriptions were associated with an increased risk of EoE for her offspring (aOR, 5.1; 95% CI, 1.8-14.8). Maternal and infant antibiotic use were associated with increased risk of developing EoE, in a dose-response manner, and the magnitude of association was highest for exposure near the time of delivery. Increased risk was also observed with maternal and infant acid suppressant use. Exposure during early life, a period of known developmental susceptibility, may confer the greatest risk and opportunity for risk mitigation.

Exploratory analysis of the spatial distribution of adult glioma age-adjusted county incidence rates, Nebraska Medicine, 2009-2019.

Central nervous system (CNS) cancers including gliomas have low incidence but high mortality. The age-adjusted incidence rate for CNS cancers is higher in Nebraska than nationally. This exploratory study was motivated by glioma patient inquiries about possible clustering of cases within the state to see if more in-depth investigation was warranted. Using electronic health records from Nebraska Medicine, we identified Nebraska adult (age ≥19) glioma patients diagnosed between January 1, 2009 and November 1, 2019. Patient residential addresses were geocoded, mapped, and combined with annual US Census data to compute age-adjusted incidence rates (AAIR) at the county level. Counties with fewer than five cases were excluded to protect patient identity. ArcGIS software was used for geocoding and mapping. Of the 285 cases included in the analysis, 53.2% were geocoded with exact match and the remainder were processed manually. Cases occurred in 47 of the 93 counties. After data suppression, 11 counties (228 cases) visually clustered in eastern and central Nebraska with AAIR ranging from 0.85 to 5.66 per 100 000. Many counties in the state were excluded from analysis of this rare cancer due to the small number of cases leading to unstable rates and the need to suppress data to protect patient privacy. However, this preliminary study suggests that glioma incidence is highest in central and eastern Nebraska. Next steps include analysis of state cancer registry data to ensure more complete case ascertainment.

Abstract WP135: Trends In The Incidence Of Spontaneous Cervical Artery Dissection

Background: Arterial dissection represents a rare but significant cause of ischemic stroke. We hypothesized that the detection rate of arterial dissections has increased in recent decades. Objective: To determine the incidence of cervical artery dissection in a defined population. Methods: We identified Olmsted County, Minnesota residents diagnosed with carotid artery or vertebral artery dissection between 2002 and 2020 using the Rochester Epidemiology Project database. Patients who had suffered major trauma, were under 18 years of age or had intracranial artery dissections were excluded. Virtually all Olmsted County residents receive their medical care within the participating health systems, leading to a high likelihood of complete case ascertainment. We assessed longitudinal trends by dividing the data into 5-year time windows, with the last being a 4-year interval. Incidence rates were adjusted for age and sex. Results: In a 19-year period from 2002 through 2020, 127 patients with a diagnosis of cervical artery dissection were identified. There were 64 females (50.4%) and 63 males (49.6%). The average age at diagnosis was 51.2 years (SD 15.7). There were 63 internal carotid artery dissections (ICAD), 60 vertebral artery dissections (VAD), and three common carotid artery dissections (CCAD) identified. One patient had ICAD and VAD at diagnosis. The overall incidence rate of detection for cervical artery dissection, adjusted for age and sex, was 4.9 per 100,000 person-years (py) (95% CI, 4.0 to 5.7). The incidence rate of ICAD was 2.5 per 100,000 py (95% CI, 1.8 to 3.1). The incidence rate of VAD was 2.3 per 100,000 py (95% CI, 1.7 to 2.9). The incidence rate of CAD gradually increased over time from 2.3 per 100,000 py (95% CI, 1.1 to 3.5) in 2002-2006 to 9.4 per 100,000 py (95% CI, 6.9 to 11.8) in 2017-2020, a 4.2-fold increase. Conclusion: The incidence of detection rate of cervical artery dissection increased over four-fold in the last 19 years. This can potentially be attributed to increased usage of non-invasive angiographic imaging.

Birth prevalence of congenital heart defects in Western Australia, 1990-2016.

To describe the birth prevalence and characteristics of congenital heart defects in a geographically defined Australian population. This descriptive, population-based study examined congenital heart defects in live births, stillbirths and pregnancy terminations ascertained by the Western Australian Register of Developmental Anomalies, 1990-2016. Birth prevalence (per 1000 births) was stratified by severity, known cause, maternal and birth characteristics, and primary diagnosis; and prevalence ratios were calculated for Aboriginal versus non-Aboriginal births. Temporal trends in prevalence, diagnosis age and infant mortality were examined. For births 1990-2010 (allowing 6 years for complete case ascertainment by 2016), 6419 cases were identified; prevalence was 11.5 per 1000 births (95% confidence interval (CI), 11.2-11.8). Severe defects were ascertained in 2.5 per 1000 births (95% CI 2.4-2.7). Most cases were liveborn (5842, 91.0%), and 28.9% had other birth defects. Prevalence was slightly higher in Aboriginal births (prevalence ratio 1.1; 95% CI 1.0-1.2); and the infant mortality rate more than doubled (13.4% vs. 5.8%, P< 0.001). Prenatal diagnosis increased over time but, in remote areas, was significantly lower for Aboriginal versus non-Aboriginal cases (3.1% vs. 9.3%; P= 0.008). A cause was identified in 920 cases (14.3%), more often for severe defects (347, 24.4%); 63% of known causes were rare diseases. Congenital heart defects associated with fetal alcohol spectrum disorder were much more common in Aboriginal births (prevalence ratio 82; 95% CI 28-239). Earlier detection of congenital heart defects and improved survival has occurred over time, although discrepancies between ethnic groups and regions warrant further investigation and strategic action.

Disclosing progress in cancer survival with less delay.

Cancer registration plays a key role in monitoring the burden of cancer. However, cancer registry (CR) data are usually made available with substantial delay to ensure best possible completeness of case ascertainment. Here, we investigate empirically with routinely available data whether such a delay is mandatory for survival analyses or whether data can be used earlier to provide more up-to-date survival estimates. We compared distributions of prognostic factors and period relative survival estimates for three population-based CRs in Germany (Schleswig-Holstein (SH), Rhineland-Palatinate (RP), Saarland (SA)) computed on datasets extracted one (DY+1) to 5 years after the year of diagnosis (DY+5; reference). Analyses were conducted for seven cancer sites and various survival analyses scenarios. The proportion of patients registered in the datasets at a given time varied strongly across registries with 57% (SH), 2% (RP) and 26% (SA) registered in DY+1 and >93% in all registries in DY+3. Five-year survival estimates for the most recent three-year period were comparable to estimates from the reference dataset already in DY+1 (mean absolute deviations = 0.2-0.6% units). Deviations >1% units were only observed for pancreatic and lung cancer in RP and leukemia in SA (all ≤1.5% units). For estimates of 1-year survival based on the most recent 1-year period only, slightly longer delays were required, but reasonable estimates were still obtained after 1-2 years, depending on the CR and cancer site. Thus, progress in cancer survival could be disclosed in a more timely manner than commonly practiced despite delays in completeness of registration.

Bolstering gun injury surveillance accuracy using capture–recapture methods

Using a single source of data, such as police records, or combining data from multiple sources results in an undercount of gun-related injuries. To improve gun-related injury surveillance accuracy by using capture-recapture methods, data were culled from law enforcement, emergency departments, emergency medical services, media, and medical examiner records. The data overlap was operationalized using capture-recapture to generate estimates of uncounted gun incidents. Dependencies between data sources were controlled using log-linear modeling for accurate estimates. New Haven, Connecticut. The study population included subjects injuried/killed from a gun projectile. Incidence was measured using capture-recapture. 49 gun injuries occurred within the defined geography. No single source recorded more than 43 gun-related injuries/deaths. Log-linear modeling estimated the actual number of injuries to be 49.1 (95% CI 49-49.9). Capture-recapture may be less useful in large metropolitan areas that cross state geographical boundaries because of how government agency data are aggregated within each state. No single data source achieves complete gun-related case ascertainment. Log-linear and capture-recapture methods significantly improve gun-related injury estimates.

CT angiogram negative perimesencephalic subarachnoid hemorrhage: is a subsequent DSA necessary? A systematic review

BackgroundPerimesencephalic subarachnoid hemorrhage (PMSAH) is a benign subtype with distinct clinical-radiologic features. Digital subtraction angiography (DSA) remains the gold standard investigation for exclusion of a macrovascular cause, although increasingly more...

Abstract 5058: The association between smoking status at diagnosis and breast cancer specific mortality in Ireland: A population based study

Abstract Background: Breast cancer is the most commonly diagnosed cancer worldwide and is a leading cause of breast cancer mortality in females. In recent years, 5 year survival rates have greatly improved for breast cancer however a clear disparity exists between survival in countries of high income compared to low and middle income. Disparity in survival also exists within individual countries. The identification of modifiable lifestyle factors can be an impactful and cost effective way to improve breast cancer outcomes worldwide, particularly in low income counties. An association between active smoking at diagnosis and breast cancer specific mortality has been reported by a number of studies to date. However, there is a paucity of studies undertaken in European populations. This large study was conducted to investigate whether smoking status at diagnosis is an independent prognostic factor for breast cancer specific mortality in the Irish female population. Methods: All data was derived from the National Cancer Registry Ireland database which records all incident cancers in the Republic of Ireland. Completeness of case ascertainment at 5 years after diagnosis is estimated to be at 98%. Multivariable Cox proportional Hazards models were used to compare breast cancer specific mortality in current smokers, ex-smokers and never smokers. Subgroup analyses by breast cancer molecular subtype was also conducted. Results: Data for women with known smoking status at time of diagnosis included 37,711 invasive breast cancer cases that accrued 263,626 women-years. Current smokers had a significantly increased risk of breast cancer specific mortality compared to never smokers (multi-variable HR, 1.3; 95% CI, 1.19, 1.41). Ex-smokers did not have a significantly different hazard ratio compared to never smokers (HR, 1.02; 95% CI, 0.92, 1.12). In subgroup analyses, risk of dying from breast cancer was increased most for current smokers with HER2+ disease compared to never smokers in the 5 years post diagnosis (HR, 1.53; 95% CI, 1.11, 2.12). This was followed by luminal A disease (HR, 1.39: 95% CI, 1.17, 1.65). Conclusion. Breast cancer patients who are current smokers at diagnosis have a statistically significant increased risk of breast cancer specific mortality. This risk differs depending on molecular subtype of disease. Citation Format: Maeve Kiely, Joesph McDevitt, Linda Sharp. The association between smoking status at diagnosis and breast cancer specific mortality in Ireland: A population based study [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2019; 2019 Mar 29-Apr 3; Atlanta, GA. Philadelphia (PA): AACR; Cancer Res 2019;79(13 Suppl):Abstract nr 5058.

Epidemiology of neuromyelitis optica spectrum disorder in Denmark (1998-2008, 2007-2014).

Epidemiological studies of the uncommon disorder neuromyelitis optica spectrum disorder (NMOSD) may be difficult to interpret because of the evolving nature of diagnostic criteria, differences in the definition and accuracy of NMOSD diagnosis, the completeness of case ascertainment, and variability in assays for the disease‐specific biomarker aquaporin‐4 (AQP4)‐IgG. A sub‐group of patients with the clinical syndrome NMOSD lack detectable AQP4‐IgG and in these cases an accurate diagnosis requires precise diagnostic algorithms and longitudinal follow‐up. Consecutive sets of criteria for NMO/NMOSD have been introduced during the two last decades. Such criteria need validation in different populations. Detection of other autoantibodies, such as IgG specific for myelin oligodendrocyte glycoprotein or for glial fibrillary acidic protein in a sub‐group of AQP4‐IgG–negative NMOSD patients, has improved over the past decade and may lead to overlap of the clinical syndromes/phenotypes. This review begins by summarizing current knowledge on the widening clinical spectrum of NMOSD. Subsequently, we describe two epidemiological studies from Denmark carried out in two different decades (1998–2008 and 2007–2014) and comment on the differences in study design, patient ascertainment, and interpretation of results. These factors may explain some of the observed differences, reflecting the complexity and providing a clear example of this development.

A Nationwide, Population-Based Prevalence Study of Genetic Muscle Disorders

Background: Previous epidemiological studies of genetic muscle disorders have relied on medical records to identify cases and may be at risk of selection biases or have focused on selective population groups. Objectives: This study aimed to determine age-standardised prevalence of genetic muscle disorders through a nationwide, epidemiological study across the lifespan using the capture-recapture method. Methods: Adults and children with a confirmed clinical or molecular diagnosis of a genetic muscle disorder, resident in New Zealand on April 1, 2015 were identified using multiple overlapping sources. Genetic muscle disorders included the muscular dystrophies, congenital myopathies, ion channel myopathies, GNE myopathy, and Pompe disease. Prevalence per 100,000 persons by age, sex, disorder, ethnicity and geographical region with 95% CIs was calculated using Poisson distribution. Direct standardisation was applied to age-standardise prevalence to the world population. Completeness of case ascertainment was determined using capture-recapture modelling. Results: Age standardised minimal point prevalence of all genetic muscle disorders was 22.3 per 100,000 (95% CI 19.5–25.6). Prevalence in Europeans of 24.4 per 100,000, (95% CI 21.1–28.3) was twice that observed in NZ’s other 3 main ethnic groups; Māori (12.6 per 100,000, 95% CI 7.8–20.5), Pasifika (11.0 per 100,000, 95% CI 5.4–23.3), and Asian (9.13 per 100,000, 95% CI 5.0–17.8). Crude prevalence of myotonic dystrophy was 3 times higher in Europeans (10.5 per 100,000, 9.4–11.8) than Māori and Pasifika (2.5 per 100,000, 95% CI 1.5–4.2 and 0.7 per 100,000, 95% CI 0.1–2.7 respectively). There were considerable regional variations in prevalence, although there was no significant association with social deprivation. The final capture-recapture model, with the least deviance, estimated the study ascertained 99.2% of diagnosed cases. Conclusions: Ethnic and regional differences in the prevalence of genetic muscle disorders need to be considered in service delivery planning, evaluation, and decision making.

Research protocol: The initiation, design and establishment of the Global Angelman Syndrome Registry.

Angelman syndrome (AS) is a rare neurodevelopmental disorder affecting between 1 in 15000 and 1 in 24000 individuals. The condition results in severe developmental and expressive language delays, motor impairments and a unique behavioural phenotype consisting of excessive laughter, smiling and sociability. While many studies have contributed knowledge about the causes and natural history of the syndrome, large scale longitudinal studies are required to advance research and therapeutics for this rare syndrome. This article describes the protocol for the Global Angelman Syndrome Registry, and some initial findings. Due to the rarity of AS and the variability in symptom presentation, the registry team will strive for complete case ascertainment. Parents and caregivers will submit data to the registry via a secure internet connection. The registry consists of 10 modules that cover patient demographics; developmental, diagnostic, medical and surgical history, behaviour and development, epilepsy, medications and interventions and sleep. Since its launch at https://angelmanregistry.info in September 2016, almost 470 individuals with AS have been signed up to the registry worldwide: 59% are from North and South America, 23% are from Europe, 17% are from the Asia Pacific region and 1% are from the Middle East or Africa. The majority of registrants are children, with only 16% aged over 20years. Most participants indicated a chromosome deletion (76%), with fewer participants indicating a mutation, uniparental disomy or imprinting defect (20%). Findings indicate a need to consider recruitment strategies that target caregivers of older children and adults, and parents and caregivers from non-English speaking backgrounds.

Incidence of type 1 diabetes in China, 2010-13: population based study

ObjectiveTo estimate the incidence of type 1 diabetes in all age groups in China during 2010-13.DesignPopulation based, registry study using data from multiple independent sources.SettingNational registration system in all 505...

Estimation and Projection of Prevalence of Colorectal Cancer in Iran, 2015-2020.

Background:Population aging and more prevalent westernized lifestyle would be expected to result in a markedly rising burden of colorectal cancer (CRC) in the future years. The aim of this study is to estimate the limited-time prevalence of CRC in Iran between 2015 and 2020.Materials and Methods:Aggregated CRC incidence data were extracted from the Iranian national cancer registry (IR.NCR) reports for 2003–2009 and from GLOBOCAN-2012 database for 2012. Incidence trends were analyzed by age groups, genders, histopathologic, and topographic subtypes to estimate annual percentage changes. Incidence was projected for 2020. The prevalence was estimated applying an adopted version of a previously introduced equation to estimate limited–time prevalence based on the incidence and survival data. Monte Carlo sensitivity analyses were applied to estimate 95% uncertainty levels (ULs). In each scenario, incidence, survival, annual percentage changes, and completeness of case ascertainment at IR.NCR were replaced under pre-assumed distributions.Results:Number of estimated within 1, 2-3 and 4-5-year CRC patients in 2015 were 13676 (95% UL: 10051–18807), 20964 (15835–28268), and 14485 (11188–19293), respectively. Estimated 5-year prevalence for 2020 (99463; 75150–134744) was 2.03 times of that for 2015. Highest 5-year prevalence was estimated in ages 55–59 for females and 75 + for males. Adenocarcinoma (41376; 31227 55898) was the most prevalent histologic subtype. The most prevalent tumor location was colon (30822, 23262–41638).Conclusion:A substantial growth in the prevalence of CRC survivors is highly expected for future years in Iran. Establishment of specialized institutes is highly recommended to provide medical and especially social supports for Iranian CRC survivors.

Improving case ascertainment of congenital anomalies: findings from a prospective birth cohort with detailed primary care record linkage

BackgroundCongenital anomalies (CAs) are a common cause of infant death and disability. We linked children from a large birth cohort to a routine primary care database to detect CA diagnoses...

The impact of under-reporting of cases on the estimates of childhood cancer incidence and survival in Estonia.

About 35 new childhood cancer cases are diagnosed in Estonia (population 1.3 million in 2011) every year. Despite continuous improvements in the healthcare system and available cancer treatment options, the survival rates for childhood cancers have appeared to remain lower than the European average. These observations and the accompanying decrease in incidence led us to hypothesize that some nonfatal cases might be missing from the Estonian Cancer Registry (ECR). The aim of this study was to evaluate the completeness of reporting of childhood cancer cases to the ECR and its impact on the estimates of cancer incidence and survival. All cases of benign and malignant tumours, diagnosed in 2000-2011 among children aged 0-17 years and eligible for registration in the ECR, were included in the study. Completeness of reporting was evaluated for cases aged 0-17 years, and incidence and survival were analysed for cases aged 0-14 for international comparisons. The total number of new cancer cases increased from 459 to 515. Overall completeness of case ascertainment was estimated to be 89.5%. After adding the missing cases, the overall incidence rate increased from 12.9 to 14.9/100 000 (from 3.4 to 4.7 for leukaemias). The 2010-2014 period estimate of the 5-year survival increased from 70 to 76% for all sites combined and from 71 to 82% for leukaemias. In conclusion, the under-reporting of nonfatal childhood cancer cases to the ECR had an important impact on incidence and survival rates, causing a considerable underestimation of both.

Prevalence of microcephaly in an Australian population-based birth defects register, 1980-2015.

To describe the prevalence and characteristics of microcephaly in a geographically defined Australian population. Descriptive epidemiological study of microcephaly cases ascertained by the Western Australian Register of Developmental Anomalies, 1980-2015, defining microcephaly as an occipito-frontal head circumference below the third percentile or more than two standard deviations below the mean sex- and age-appropriate distribution curve. Microcephaly prevalence (per 10 000 births) was calculated for cases with known and unknown causes, and by demographic characteristics. Temporal trends were analysed, and prevalence ratios (PRs) and 95% CIs calculated for Aboriginal and non-Aboriginal births. For births during 1980-2009 (ie, with at least 6 years' follow-up and therefore complete case ascertainment), 416 cases were identified, a prevalence of 5.5 per 10 000 births (95% CI, 4.95-6.02), or 1 in 1830 births. There was no significant temporal trend in prevalence (P = 0.23). Most cases were in live-born children (389, 93.5%), and other major birth defects were diagnosed in 335 of the affected children (80%). Prevalence was higher in Aboriginal births (PR, 4.5; 95% CI, 3.55-5.73). A cause of microcephaly was identified in 186 cases (45% of cases), and more often for Aboriginal (64 cases, 70%) than non-Aboriginal births (122 cases, 38%). The most frequent known cause of microcephaly in Aboriginal births was fetal alcohol spectrum disorder (FASD; 11 per 10 000 births); monogenic (0.68 per 10 000) and chromosomal conditions (0.59 per 10 000 births) were the most common causes in non-Aboriginal births. These data provide a baseline for prospective surveillance of microcephaly. We identified a high proportion of cases without known cause, highlighting the need for clinicians to carefully investigate all possibilities, including emerging infections. FASD is an important cause of microcephaly in the Aboriginal population.

Brief Report: Estimated Prevalence of a Community Diagnosis of Autism Spectrum Disorder by Age 4 Years in Children from Selected Areas in the United States in 2010: Evaluation of Birth Cohort Effects.

We compared early-diagnosed autism spectrum disorder (ASD) (defined as diagnosis by age 4 years) between the 2002 and 2006 birth cohorts, in five sites of the Autism and Developmental Disabilities Monitoring Network. In the 2002 cohort, the prevalence/1000 of early-diagnosed ASD was half the 8-year-old prevalence (7.2 vs. 14.7, prevalence ratio [PR] 0.5 [0.4-0.6]). Overall, the prevalence of early-diagnosed ASD did not differ between birth cohorts (PR 1.1 [0.9-1.3]). However, in three sites with complete case ascertainment, the prevalence of early-diagnosed ASD was higher for those born in 2006 versus 2002 (PR 1.3 [1.1-1.5]), suggesting possible improvement in early identification. The lack of change in two sites may reflect less complete case ascertainment. Studies in more recent cohorts are needed.

THE IMPACT OF PHYSICIAN LED PRE-HOSPITAL CARE ON MAJOR TRAUMA MORTALITY IN CAMBRIDGESHIRE: AN OBSERVATIONAL CROSS-SECTIONAL ANALYSIS

BackgroundAfter decades of neglect, trauma service development in England has begun, but has focused on the in-hospital phase of the trauma care pathway, with a lack of national consensus on...

A quality assessment of reporting sources for microcephaly in Utah, 2003 to 2013.

Obtaining accurate microcephaly prevalence is important given the recent association between microcephaly and Zika virus. Assessing the quality of data sources can guide surveillance programs as they focus their data collection efforts. The Utah Birth Defect Network (UBDN) has monitored microcephaly by data sources since 2003. The objective of this study was to examine the impact of reporting sources for microcephaly surveillance. All reported cases of microcephaly among Utah mothers from 2003 to 2013 were clinically reviewed and confirmed. The UBDN database was linked to state vital records and hospital discharge data for analysis. Reporting sources were analyzed for positive predictive value and sensitivity. Of the 477 reported cases of microcephaly, 251 (52.6%) were confirmed as true cases. The UBDN identified 94 additional cases that were reported to the surveillance system as another birth defect, but were ultimately determined to be true microcephaly cases. The prevalence for microcephaly based on the UBDN medical record abstraction and clinical review was 8.2 per 10,000 live births. Data sources varied in the number and accuracy of reporting, but a case was more likely to be a true case if identified from multiple sources than from a single source. While some reporting sources are more likely to identify possible and true microcephaly cases, maintaining a multiple source methodology allows for more complete case ascertainment. Surveillance programs should conduct periodic assessments of data sources to ensure their systems are capturing all possible birth defects cases. Birth Defects Research (Part A) 106:983-988, 2016. © 2016 Wiley Periodicals, Inc.