Clinical Registry Data Research Articles

Comparing Spinal Muscular Atrophy (SMA) outcomes between a patient-reported membership database and a clinical data registry (P2-8.012)

<h3>Objective:</h3> The purpose of this study is to compare patient reported data collected in the Cure SMA membership database to clinician entered and electronic medical registry (EMR) derived data from the Cure SMA Clinical Data Registry (CDR) among patients who are members in both databases. <h3>Background:</h3> Cure SMA currently maintains the largest patient-reported database of persons with all types of SMA and documents selected aspects of disease such as type of SMA, date of diagnosis, SMN2 copy number, gender, date of birth and mortality. There are currently 9789 affected individuals with SMA in the membership database. In October 2018, Cure SMA launched a clinical data registry (CDR) to collect real-world data about SMA care. Data from the CDR is comprised of electronic medical records (EMR) sourced data from US hospitals and is linked to a clinician-entered electronic case report form (eCRF) to gather additional SMA-specific information that is not easily found in the EMR. There are currently 734 affected individuals with SMA in the CDR. <h3>Design/Methods:</h3> All data included in the analysis will be previously collected data and patients will not be contacted to provide additional information. Patients will be merged from both databases by first name, last name, birthdate, gender, and US state of residence. <h3>Results:</h3> Current age, race/ethnicity, SMA type, SMN2 copy number, age at SMA diagnosis, and use of FDA-approved SMA treatments will be compared at patient level. <h3>Conclusions:</h3> Findings from this study will provide support and validity to patient-reported data. Additionally, differences in outcomes between databases will highlight any gaps needed in communication between a patient and their healthcare team. <b>Disclosure:</b> Lisa Belter has received personal compensation for serving as an employee of Cure SMA. Mrs. Whitmire has received personal compensation for serving as an employee of Cure SMA. Mrs. Whitmire has received personal compensation for serving as an employee of Novo Nordisk Inc.. Mary Curry has received personal compensation for serving as an employee of Cure SMA. Dr. Schroth has received personal compensation for serving as an employee of Cure SMA.

Direct and Indirect Effects of Race and Socioeconomic Deprivation on Outcomes After Lower Extremity Bypass.

To evaluate the potential pathway, through which race and socioeconomic status, as measured by the social deprivation index (SDI), affect outcomes after lower extremity bypass chronic limb-threatening ischemia (CLTI), a marker for delayed presentation. Racial and socioeconomic disparities persist in outcomes after lower extremity bypass; however, limited studies have evaluated the role of disease severity as a mediator to potentially explain these outcomes using clinical registry data. We captured patients who underwent lower extremity bypass using a statewide quality registry from 2015 to 2021. We used mediation analysis to assess the direct effects of race and high values of SDI (fifth quintile) on our outcome measures: 30-day major adverse cardiac event defined by new myocardial infarction, transient ischemic attack/stroke, or death, and 30-day and 1-year surgical site infection (SSI), amputation and bypass graft occlusion. A total of 7077 patients underwent a lower extremity bypass procedure. Black patients had a higher prevalence of CLTI (80.63% vs 66.37%, P < 0.001). In mediation analysis, there were significant indirect effects where Black patients were more likely to present with CLTI, and thus had increased odds of 30-day amputation [odds ratio (OR): 1.11, 95% CI: 1.068-1.153], 1-year amputation (OR: 1.083, 95% CI: 1.045-1.123) and SSI (OR: 1.052, 95% CI: 1.016-1.089). There were significant indirect effects where patients in the fifth quintile for SDI were more likely to present with CLTI and thus had increased odds of 30-day amputation (OR: 1.065, 95% CI: 1.034-1.098) and SSI (OR: 1.026, 95% CI: 1.006-1.046), and 1-year amputation (OR: 1.068, 95% CI: 1.036-1.101) and SSI (OR: 1.026, 95% CI: 1.006-1.046). Black patients and socioeconomically disadvantaged patients tended to present with a more advanced disease, CLTI, which in mediation analysis was associated with increased odds of amputation and other complications after lower extremity bypass compared with White patients and those that were not socioeconomically disadvantaged.

Causes of Childhood Blindness in the United States Using the IRIS® Registry (Intelligent Research in Sight)

To investigate causes of childhood blindness in the United States using the IRIS® Registry (Intelligent Research in Sight). Cross-sectional study. Patients ≤ 18 years of age with visual acuity (VA) 20/200 or worse in their better-seeing eye in the IRIS Registry during2018. Causes of blindness were classified by anatomic site and specific diagnoses. Percentages of causes of blindness. Of 81 164 children with 2018 VA data in the IRIS Registry, 961 (1.18%) had VA 20/200 or worse in their better-seeing eye. Leading causes of blindness were retinopathy of prematurity (ROP) in 301 patients (31.3%), nystagmus in 78 patients (8.1%), and cataract in 64 patients (6.7%). The retina was the leading anatomic site (47.7%) followed by optic nerve (11.6%) and lens (10.0%). A total of 52.4% of patients had treatable causes of blindness. This analysis offers a unique cross-sectional view of childhood blindness in the United States using a clinical data registry. More than one-half of blind patients had a treatable cause of blindness. Proprietary or commercial disclosure may be found in the Footnotes and Disclosures at the end of this article.

The 2022 Annual Report of DataDerm: The database of the American Academy of Dermatology

The American Academy of Dermatology (AAD) launched DataDerm in 2016 as the clinical data registry platform of AAD. DataDerm has evolved to be the largest database containing information about dermatology patients in the world. As of December 31, 2021, DataDerm contained data from 13.2 million unique patients and 47.0 million unique patient visits, with 403 practices representing 1670 clinicians actively participating in DataDerm in 2021. Of the 1670 clinicians participating in DataDerm in 2021, the majority were dermatologists (978) followed by physician assistants (375) and nurse practitioners (163) who are employed by AAD members and meet the AAD definition of the AAD DermCare team. Furthermore, in 2021, 834 clinicians submitted data via DataDerm to the Merit-based Incentive Payment System of the Centers for Medicare & Medicaid Services. This article is the third annual report about the status of DataDerm. This year's 2022 annual report presents the progress DataDerm has made over the past year in conjunction with OM1, the data analytics partner of DataDerm, as well as the current status and future plans of DataDerm.

Evaluating agreement between clinic- and patient-reported outcomesfor weight and co-morbidities at 1 year after bariatricsurgery.

Development of patient-reported outcomes (PROs) to include traditionally clinic-reported data has the potential to decrease the data-collection burden for patients and clinicians and increase follow-up rates. However, replacing clinic report by patient report requires that the data reasonably agree. To assess agreement between PROs and clinical registry data at 1 year after bariatric surgery. Not-for-profit organization, bariatric surgery data registry, PROs platform. Patient- and clinic-reported 1-year postoperative weight and co-morbidities were compared for matched PROs and registry records. The co-morbidities evaluated were diabetes, sleep apnea, hypertension, gastroesophageal reflux disease, and hyperlipidemia. Weight difference in pounds and nominal groupings (binary, 4-level) for co-morbidities were assessed for agreement between data sources using descriptive statistics, Bland-Altman plots, multiple regression, and kappa coefficients. Sensitivity analyses and follow-up by response method were examined. Among 1130 patients with both 1-year PROs and registry weights, 95% of patient-reported weights were within 13 lb of the registry-recorded weight, and patients underreported their weight by ∼2 lb, on average. Percent agreement and kappa coefficients were highest for diabetes (n = 999; binary: 94%, κ = .72; 4-level: 86%, κ = .71) and lowest for gastroesophageal reflux disease (n = 1032; binary: 75%, κ = .40; 4-level: 57%, κ = .35). Of patients eligible for both PROs and registry 1-year follow-up, 21% had PROs only. One-year patient- and clinic-reported weights and disease status for patients with diabetes and hypertension showed high agreement. The degree of bias from patient report was low. Patient report is a viable alternative to clinic report for certain objective measurements and may increase follow-up.

MP37-14 CHOICE OF FIRST MEDICATION PRESCRIBED FOR OVERACTIVE BLADDER CHANGES WITH TIME: TRENDS FROM THE AUA AQUA REGISTRY

You have accessJournal of UrologyCME1 Apr 2023MP37-14 CHOICE OF FIRST MEDICATION PRESCRIBED FOR OVERACTIVE BLADDER CHANGES WITH TIME: TRENDS FROM THE AUA AQUA REGISTRY Camille Vélez, Max Bowman, Katherine Shapiro, Rachel Mbassa, Raymond Fang, Benjamin Brucker, and Michelle van Kuiken Camille VélezCamille Vélez More articles by this author , Max BowmanMax Bowman More articles by this author , Katherine ShapiroKatherine Shapiro More articles by this author , Rachel MbassaRachel Mbassa More articles by this author , Raymond FangRaymond Fang More articles by this author , Benjamin BruckerBenjamin Brucker More articles by this author , and Michelle van KuikenMichelle van Kuiken More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000003275.14AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: Overactive bladder (OAB) is a clinical condition that can greatly affect quality of life. Pharmacological management of OAB may involve use of anticholinergic (ACH) or beta-3 agonists (B3) medications; however, there is increasing evidence of cognitive side-effects associated with the long-term use of ACH medications. Using the AUA AQUA Registry, we aim to evaluate how prescription trends between ACH and B3 agonists has changed over time. METHODS: We queried the AUA Quality (AQUA) Registry database, a national Qualified Clinical Data Registry, for patients >18 years with a new diagnosis of OAB including urinary urgency, frequency, and urgency urinary incontinence (UUI) from 2014-2020 using ICD-9 and ICD-10 codes. Patients with a diagnosis of neurogenic bladder or neurologic diagnosis associated with neurogenic bladder were excluded. The choice of first medication prescribed for OAB was assessed and these trends were observed and analyzed. RESULTS: A total of 641,112 patients were diagnosed with OAB over the study period, 17.5% of whom received a medication prescription. In 2014, ACH comprised 76.3% of OAB treatment prescriptions, while B3 agonists made up 22.1%; Over time, ACH use steadily declined to only 60.3% of first prescriptions, while B3 agonist prescriptions nearly doubled to a peak of 41.4% in 2019, leveling off to 38% in 2020. (Figure 1a). When comparing individual ACH medications, a sharp decrease was observed in solifenacin prescriptions, which went from the most prescribed ACH at 34.8% in 2014 to third most prescribed at 7.7% in 2020. As solifenacin use declined, oxybutynin ER use increased from 11.9% in 2014 to a peak of 26.4% in 2020 to become the most prescribed ACH (Figure 1b). CONCLUSIONS: These prescription trends illustrate that ACH medications remain the most common class of medications first prescribed for OAB, however B3 agonist use has steadily increased with time. Further investigation leveraging the AUA AQUA Registry will help understand what drives OAB medication prescription trends by urologists in the US. Source of Funding: This study was supported by AUA statistical services © 2023 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 209Issue Supplement 4April 2023Page: e519 Advertisement Copyright & Permissions© 2023 by American Urological Association Education and Research, Inc.MetricsAuthor Information Camille Vélez More articles by this author Max Bowman More articles by this author Katherine Shapiro More articles by this author Rachel Mbassa More articles by this author Raymond Fang More articles by this author Benjamin Brucker More articles by this author Michelle van Kuiken More articles by this author Expand All Advertisement PDF downloadLoading ...

Risk of interpersonal violence during and after pregnancy among people with schizophrenia: a population-based cohort study.

Schizophrenia is associated with increased risk of experiencing interpersonal violence. Little is known about risk specifically around the time of pregnancy. This population-based cohort study included all individuals (aged 15-49 yr) listed as female on their health cards who had a singleton birth in Ontario, Canada, between 2004 and 2018. We compared those with and without schizophrenia on their risk of an emergency department (ED) visit for interpersonal violence in pregnancy or within 1 year postpartum. We adjusted relative risks (RRs) for demographics, prepregnancy history of substance use disorder and history of interpersonal violence. In a subcohort analysis, we used linked clinical registry data to evaluate interpersonal violence screening and self-reported interpersonal violence during pregnancy. We included 1 802 645 pregnant people, 4470 of whom had a diagnosis of schizophrenia. Overall, 137 (3.1%) of those with schizophrenia had a perinatal ED visit for interpersonal violence, compared with 7598 (0.4%) of those without schizophrenia, for an RR of 6.88 (95% confidence interval [CI] 5.66-8.37) and an adjusted RR of 3.44 (95% CI 2.86-4.15). Results were similar when calculated separately for the pregnancy (adjusted RR 3.47, 95% CI 2.68-4.51) period and the first year postpartum (adjusted RR 3.45, 95% CI 2.75-4.33). Pregnant people with schizophrenia were equally likely to be screened for interpersonal violence (74.3% v. 73.8%; adjusted RR 0.99, 95% CI 0.95-1.04), but more likely to self-report it (10.2% v. 2.4%; adjusted RR 3.38, 95% CI 2.61-4.38), compared with those without schizophrenia. Among patients who did not self-report interpersonal violence, schizophrenia was associated with an increased risk for a perinatal ED visit for interpersonal violence (4.0% v. 0.4%; adjusted RR 6.28, 95% CI 3.94-10.00). Pregnancy and postpartum are periods of higher risk for interpersonal violence among people with schizophrenia compared with those without schizophrenia. Pregnancy is a key period for implementing violence prevention strategies in this population.

Providers, peers and patients. How do physicians’ practice environments affect patient outcomes?

We study how physicians’ practice environments affect their treatment decisions and quality of care. Using clinical registry data from Sweden, we compare stent choices of cardiologists moving across hospitals over time. To disentangle changes in practice styles attributable to hospital- and peer group-specific factors, we exploit quasi-random variation on cardiologists working together on the same days. We find that migrating cardiologists’ stent choices rapidly adapt to their new practice environment after relocation and are equally driven by the hospital and peer environments. In contrast, while decision errors increase, treatment costs and adverse clinical events remain largely unchanged despite the altered practice styles.

Coronary artery restenosis and target lesion revascularisation in women by pregnancy history

BackgroundWomen’s pregnancy history is associated with incident risk of coronary artery disease with some evidence also suggesting a relevance for prognosis following treatment.ObjectivesTo study the associations between maternal history of...

Trends in pediatric non-operating room anesthesia: Data from the National Anesthesia Clinical Outcomes Registry.

Modern pediatric anesthetic encounters occur in operating rooms and non-operating room settings. Most anesthesia providers have cared for children in radiology, endoscopy, and other interventional settings at some point in their training and career. There is an absence of published data on the frequency, timing, and demographics of these pediatric anesthesia encounters. The primary goal of our study is to present data spanning a variety of institutions and practice settings in the United States to define the percentage of non-operating room anesthetic encounters in children. We also set out to characterize the frequency of the most common procedures in the non-operating room setting within the United States. Using the National Anesthesia Clinical Outcomes Registry data from 2015-2019, we analyzed and reported data on current trends in non-operating room anesthesia including patient demographics, encounter setting, procedure type, and the time at which anesthetic encounters occurred. 2 236 788 pediatric anesthetic encounters (patient age <18 y.o.) were analyzed revealing that 22.7% of all pediatric anesthetics occur in non-operating room settings. Patients were more likely to have higher American Society of Anesthesiologists Physical Status classifications in the non-operating room anesthesia group. Gastroenterological suites are the most common setting reported for pediatric non-operating room anesthesia. Non-operating room anesthesia in the United States is a prominent segment of pediatric anesthetic practice. Pediatric patients encountered in the non-operating room setting have more comorbidities, though further studies are needed to characterize the implication of this finding.

Clinical Distribution and Drug Resistance of Pseudomonas aeruginosa in Guangzhou, China from 2017 to 2021.

The aim of the current study was to analyse the distribution of antimicrobial drug resistance (AMR) among Pseudomonas aeruginosa (P. aeruginosa, PA) isolates from Guangdong Provincial People's Hospital (GDPH) from 2017 to 2021, and the impact of the COVID-19 outbreak on changes in the clinical distribution and drug resistance rate of P. aeruginosa to establish guidelines for empiric therapy. Electronic clinical data registry records from 2017 to 2021 were retrospectively analysed to study the AMR among P. aeruginosa strains from GDPH. The strains were identified by VITEK 2 Compact and MALDI-TOF MS, MIC method or Kirby-Bauer method for antibiotic susceptibility testing. The results were interpreted according to the CLSI 2020 standard, and the data were analysed using WHONET 5.6 and SPSS 23.0 software. A total of 3036 P. aeruginosa strains were detected in the hospital from 2017 to 2021, and they were primarily distributed in the ICU (n = 1207, 39.8%). The most frequent specimens were respiratory tract samples (59.6%). The detection rate for P. aeruginosa in 5 years was highest in September, and the population distribution was primarily male(68.2%). For the trend in the drug resistance rate, the 5-year drug resistance rate of imipenem (22.4%), aztreonam (21.5%) and meropenem (19.3%) remained at high levels. The resistance rate of cefepime decreased from 9.4% to 4.8%, showing a decreasing trend year by year (p < 0.001). The antibiotics with low resistance rates were aminoglycoside antibiotics, which were gentamicin (4.4%), tobramycin (4.3%), and amikacin (1.4%), but amikacin showed an increasing trend year by year (p = 0.008). Our analysis indicated that the detection rate of clinically resistant P. aeruginosa strains showed an upwards trend, and the number of multidrug-resistant (MDR) strains increased year by year, which will lead to stronger pathogenicity and mortality. However, after the outbreak of COVID-19 in 2020, the growth trend in the number of MDR bacteria slowed, presumably due to the strict epidemic prevention and control measures in China. This observation suggests that we should reasonably use antibiotics and treatment programs in the prevention and control of P. aeruginosa infection. Additionally, health prevention and control after the outbreak of the COVID-19 epidemic (such as wearing masks, washing hands with disinfectant, etc., which reduced the prevalence of drug resistance) led to a slowdown in the growth of the drug resistance rate of P. aeruginosa in hospitals, effectively reducing the occurrence and development of drug resistance, and saving patient's treatment costs and time.

Short- and long-term real-world survival for metastatic bile duct cancer, 2000 to 2018.

523 Background: Real-world survival outcomes in metastatic biliary tract cancer (BTC) are largely unknown. Quoted numbers are often based on reports of clinical trials and hospital registry data and may not be representative of patients treated in the real world. Furthermore, the impact of more widespread adoption of standard combination chemotherapy since 2010 on survival is unclear. We performed a population-based survival analysis of patients who presented with metastatic BTC, including intrahepatic cholangiocarcinoma, extrahepatic cholangiocarcinoma and gallbladder cancer. Methods: Utilizing the Surveillance, Epidemiology, and End Results (SEER) database, we collected data for patients diagnosed with metastatic BTC from 2000 to 2018 and stratified by overall survival (OS) of ≤ 3 months (short-term survivors) or ≥ 12 months (long-term survivors), before and after 2010. Additional patient and tumor characteristics, including anatomic location, prior surgical intervention, age, sex, race, and marital status were retrieved. Survival was analyzed using the Kaplan-Meier method. Multivariate cox regression models assessing effects of patient and tumor characteristics between short-term and long-term survivors were employed. Results: Of the 13,287 cases retrieved, 57% were female. Median age was 68 years (range 10-100). Prognosis correlated with anatomic location, marital status, and period of diagnosis. 41% of patients were short term survivors and only 20% were long term survivors. Median OS was 4.5 months for the entire cohort. Median OS only improved marginally from 3.5 months pre-2010 to 4.5 months post-2010 ( p&lt;0.001). Long-term survivors tended to be younger, with a median age at diagnosis of 64 years vs 72 years ( p&lt;0.001). Within the long-term survivor cohort, intrahepatic disease was significantly associated with improved outcomes (HR 0.81, 95% CI 0.73 – 0.90, p= 0.001). Conclusions: The real-world prognosis of metastatic BTC is remarkably poorer than described in clinical trials as a large proportion of patients survive less than three months. Over the last decade, the improvement in survival has been minimal.

Benefit of linking hospital resource information and patient-level Stroke Registry data.

Variation in delivery of evidence-based care affects outcomes for patients with stroke. A range of hospital (organizational), patient and clinical factors can affect care delivery. Clinical registries are widely used to monitor stroke care and guide quality improvement efforts within hospitals. However, hospital features are rarely collected. We aimed to explore the influence of hospital resources for stroke, in metropolitan and regional/rural hospitals, on the provision of evidence-based patient care and outcomes. 2017 National Audit organizational survey (Australia) linked with patient-level data from the Australian Stroke Clinical Registry (AuSCR) (2016-2017 admissions). Regression models were used to assess the associations between hospital resources (based on the 2015 Australian National Acute Stroke Services Framework) and patient care (reflective of national guideline recommendations), as well as 90 to 180 day readmissions and health-related quality of life (HRQoL). Models were adjusted for patient factors, including severity of stroke. 52/127 hospitals with organizational survey data were merged with 22,832 AuSCR patients with first-ever stroke/transient ischemic attack (median age 75years; 55% male; 66% ischemic). In metropolitan hospitals (N=42, 20,977 patients; 1,701 thrombolyzed; 2,395 readmitted between 90 and 180 days post stroke), a faster median door-to-needle time for thrombolysis was associated with 500+ annual stroke admissions (-15.9min, 95%CI -27.2,-4.7), annual thrombolysis >20 patients (-20.2min, 95%CI -32.0,-8.3), and having specialist stroke staff (dedicated medical lead and stroke coordinator;-12.7min, 95%CI -25.0,-0.4). A reduced likelihood of all cause readmissions between 90 and 180 days was evident in metropolitan hospitals using care pathways for stroke management (OR 0.82, 95%CI 0.67, 0.99). In regional/rural hospitals (N=10, 1,855 patients), being discharged with a care plan was also associated with use of stroke clinical pathways (OR 3.58, 95%CI 1.45, 8.82). No specific hospital resources influenced 90 to 180-day HRQoL. Relevant to all international registries, integrating information about hospital resources with clinical registry data provides greater insights into factors that influence evidence-based care.

An economic evaluation of vagus nerve stimulation as an adjunctive treatment to anti-seizure medications for the treatment of drug resistant epilepsy in the United States

IntroductionPeople with recurrent epileptic seizures are typically treated with anti-seizure medications (ASMs). Around a third of epilepsy patients fail to achieve an adequate response to ASMs and may be eligible to receive vagus nerve stimulation (VNS) therapy for their drug-resistant epilepsy (DRE) if they are unsuited to surgery. VNS received approval from the United States (US) Food and Drug Administration agency. However, there has to date been no comprehensive cost effectiveness evaluation of VNS within the US setting. This study was designed, using a US Medicare perspective, to estimate costs and quality-adjusted life years (QALYs) associated with VNS as an adjunct to ongoing ASM therapy, compared to ASMs alone.MethodsWe developed a cohort state transition model in Microsoft Excel, with four health states defined by different percentage reductions in seizure frequency, with a 3-month cycle and transition probabilities derived from published clinical trials and registry data. Sensitivity analyses were conducted to understand the impact of parameter uncertainty. Costs included the VNS device, placement, programming, battery changes, and removal; ASM therapy; adverse events associated with VNS (dyspnea, hoarseness, and cough); and costs associated with seizure burden (i.e. hospitalizations, emergency department visits, neurologist visits).ResultsUnder base case assumptions, treatment with VNS was associated with a 0.385 QALY gain and a $109,678 saving per patient, when compared with ASM therapy alone. The incremental net monetary benefit (iNMB) was $128,903 at a threshold of $50,000 per QALY, with the positive iNMB indicating that VNS is a highly cost effective treatment. This result is explained by the modeled reduction in relative seizure frequency and associated reduction in healthcare resource use that the VNS group experienced. Sensitivity analyses supported this conclusion.ConclusionsVNS was evaluated as a cost effective addition to the current standard of care in the treatment of DRE in the US Medicare context.

The Society of Thoracic Surgeons Adult Cardiac Surgery Database: 2022 Update on Outcomes and Research

The Society of Thoracic Surgeons Adult Cardiac Surgery Database is the most mature and comprehensive cardiac surgery database. It is one of the most respected clinical data registries in health care, providing accurate risk-adjusted benchmarks, a foundation for quality measurement and improvement activities, and the ability to perform novel research. This report encompasses data from the years 2020 and 2021 and is the seventh in a series of reports that provide updated volumes, outcomes, database-related developments, and research summaries using the Adult Cardiac Surgery Database.

Using machine learning and clinical registry data to uncover variation in clinical decision making

Clinical registry data contains a wealth of information on patients, clinical practice, outcomes and interventions. Machine learning algorithms are able to learn complex patterns from data. We present methods for using machine learning with clinical registry data for quality improvement by identifying where variation in decision making occurs. Using a registry of stroke patients, we demonstrate how machine learning can be used to: investigate whether patients would have been treated differently had they attended a different hospital; group hospitals according to clinical decision making practice; identify where there is variation in decision making between hospitals; characterise patients that hospitals find it hard to agree on how to treat. Our methods should be applicable to any clinical registry and any machine learning algorithm to investigate the extent to which clinical practice is standardized and identify areas for improvement at a hospital level.

Planning for Future Is Critical to Protecting Our Profession and Americans’ Mental Health

Planning for Future Is Critical to Protecting Our Profession and Americans’ Mental Health

Importance of Prospective Registries and Clinical Research Networks in the Evolution of Spinal Cord Injury Care.

Only 100 years ago, traumatic spinal cord injury (SCI) was commonly lethal. Today, most people who sustain SCI survive with continual efforts to improve their quality of life and neurological outcomes. SCI epidemiology is changing as preventative interventions reduce injuries in younger individuals, and there is an increased incidence of incomplete injuries in aging populations. Early treatment has become more intensive with decompressive surgery and proactive interventions to improve spinal cord perfusion. Accurate data, including specialized outcome measures, are crucial to understanding the impact of epidemiological and treatment trends. Dedicated SCI clinical research and data networks and registries have been established in the United States, Canada, Europe, and several other countries. We review four registry networks: the North American Clinical Trials Network (NACTN) SCI Registry, the National Spinal Cord Injury Model Systems (SCIMS) Database, the Rick Hansen SCI Registry (RHSCIR), and the European Multi-Center Study about Spinal Cord Injury (EMSCI). We compare the registries' focuses, data platforms, advanced analytics use, and impacts. We also describe how registries' data can be combined with electronic health records (EHRs) or shared using federated analysis to protect registrants' identities. These registries have identified changes in epidemiology, recovery patterns, complication incidence, and the impact of practice changes such as early decompression. They've also revealed latent disease-modifying factors, helped develop clinical trial stratification models, and served as matched control groups in clinical trials. Advancing SCI clinical science for personalized medicine requires advanced analytical techniques, including machine learning, counterfactual analysis, and the creation of digital twins. Registries and other data sources help drive innovation in SCI clinical science.

Technology and Innovation in Global Ophthalmology: The Past, the Potential, and a Path Forward.

Technology and Innovation in Global Ophthalmology: The Past, the Potential, and a Path Forward.

Nearly one in five older adults in Danish nursing homes live with type 2 diabetes.

This study aimed to investigate the prevalence of type 2 diabetes (T2D) among Danish nursing home residents (aged ⩾65 years). Individuals with T2D in the Danish population of older adults in 2018 were identified using a Danish diabetes register based on administrative and clinical register data. Data on age, sex, type of housing, educational level and place of origin were obtained from various high-quality administrative registers. We calculated frequencies of T2D among older adults living in nursing homes and in other types of housing. We performed a multiple logistic regression analysis to estimate the odds ratio (OR) of T2D among people living in nursing homes and adjusted for sex, age, educational level and place of origin. All Danish older adults aged ⩾65 years, alive and living in Denmark on 31 December 2018 were included (N=1,170,517). Nursing home residents accounted for 37,891 older adults, and of these, 19% had T2D, whereas 14% of older adults living in other types of housing had T2D. According to the multiple logistic regression analysis, nursing home residents had a higher OR of having T2D compared to older adults living in other types of housing (OR=1.47; confidence interval 1.43-1.51) when adjusting for socio-demographic factors. The prevalence of T2D in nursing home residents exceeds the prevalence in the background population at ⩾65 years of age. This indicates a need for increased focus on individualised interdisciplinary care plans aimed at maintaining physical function and maximising quality of life for this group of vulnerable older adults.