Creating an asset registry for railway electrical traction equipment with open standards

An asset registry arguably forms the core system that needs to be in place before other systems can operate or interoperate. Most systems have rudimentary asset registry functionality that store assets, relationships, or characteristics, and this leads to different asset management systems storing similar sets of data in multiple locations in an organisation. As organisations have been slowly moving their information architecture toward a service-oriented architecture, they have also been consolidating their multiple data stores, to form a “single point of truth”. As part of a strategy to integrate several asset management systems in an Australian railway organisation, a case study for developing a consolidated asset registry was conducted. A decision was made to use the MIMOSA OSA-EAI CRIS data model as well as the OSA-EAI Reference Data in building the platform due to the standard’s relative maturity and completeness. A pilot study of electrical traction equipment was selected, and the data sources feeding into the asset registry were primarily diagrammatic based. This paper presents the pitfalls encountered, approaches taken, and lessons learned during the development of the asset registry.

A prototype system for the digital lodgement of spatial data

This dissertation develops the model of a prototype system for the digital lodgement of spatial data sets with statutory bodies responsible for the registration and approval of land related actions under the Torrens Title system. Spatial data pertain to the location of geographical entities together with their spatial dimensions and are classified as point, line, area or surface. This dissertation deals with a sub-set of spatial data, land boundary data that result from the activities performed by surveying and mapping organisations for the development of land parcels. The prototype system has been developed, utilising an event-driven paradigm for the user-interface, to exploit the potential of digital spatial data being generated from the utilisation of electronic techniques. The system provides for the creation of a digital model of the cadastral network and dependent data sets for an area of interest from hard copy records. This initial model is calibrated on registered control and updated by field survey to produce an amended model. The field-calibrated model then is electronically validated to ensure it complies with standards of format and content. The prototype system was designed specifically to create a database of land boundary data for subsequent retrieval by land professionals for surveying, mapping and related activities. Data extracted from this database are utilised for subsequent field survey operations without the need to create an initial digital model of an area of interest. Statistical reporting of differences resulting when subsequent initial and calibrated models are compared, replaces the traditional checking operations of spatial data performed by a land registry office. Digital lodgement of survey data is fundamental to the creation of the database of accurate land boundary data. This creation of the database is fundamental also to the efficient integration of accurate spatial data about land being generated by modem technology such as global positioning systems, and remote sensing and imaging, with land boundary information and other information held in Government databases. The prototype system developed provides for the delivery of accurate, digital land boundary data for the land registration process to ensure the continued maintenance of the integrity of the cadastre. Such data should meet also the more general and encompassing requirements of, and prove to be of tangible, longer term benefit to the developing, electronic land information industry.

Utility of routine data sources for feedback on the quality of cancer care: an assessment based on clinical practice guidelines

Background Not all cancer patients receive state-of-the-art care and providing regular feedback to clinicians might reduce this problem. The purpose of this study was to assess the utility of various data sources in providing feedback on the quality of cancer care. Methods Published clinical practice guidelines were used to obtain a list of processes-of-care of interest to clinicians. These were assigned to one of four data categories according to their availability and the marginal cost of using them for feedback. Results Only 8 (3%) of 243 processes-of-care could be measured using population-based registry or administrative inpatient data (lowest cost). A further 119 (49%) could be measured using a core clinical registry, which contains information on important prognostic factors (e.g., clinical stage, physiological reserve, hormone-receptor status). Another 88 (36%) required an expanded clinical registry or medical record review; mainly because they concerned long-term management of disease progression (recurrences and metastases) and 28 (11.5%) required patient interview or audio-taping of consultations because they involved information sharing between clinician and patient. Conclusion The advantages of population-based cancer registries and administrative inpatient data are wide coverage and low cost. The disadvantage is that they currently contain information on only a few processes-of-care. In most jurisdictions, clinical cancer registries, which can be used to report on many more processes-of-care, do not cover smaller hospitals. If we are to provide feedback about all patients, not just those in larger academic hospitals with the most developed data systems, then we need to develop sustainable population-based data systems that capture information on prognostic factors at the time of initial diagnosis and information on management of disease progression.

Indications for early hip revision surgery in the UK : A re-analysis of NJR data

This study determined the rate and indication for revision between cemented, uncemented, hybrid and resurfacing groups from NJR (6 th edition) data. Data validity was determined by interrogating for episodes of misclassification. We identified 6,034 (2.7%) misclassified episodes, containing 97 (4.3%) revisions. Kaplan-Meier revision rates at 3 years were 0.9% cemented, 1.9% for uncemented, 1.2% for hybrids and 3.0% for resurfacings (significant difference across all groups, p<0.001, with identical pattern in patients <55 years). Regression analysis indicated both prosthesis group and age significantly influenced failure (p<0.001). Revision for pain, aseptic loosening, and malalignment were highest in uncemented and resurfacing arthroplasty. Revision for dislocation was highest in uncemented hips (significant difference between groups, p<0.001). Feedback to the NJR on data misclassification has been made for future analysis. © 2012 Wichtig Editore.

Exeter short stems compared with standard length Exeter stems : experience from the Australian Orthopaedic Association National Joint Replacement Registry

The standard Exeter stem has a length of 150mm with offsets 37.5mm to 56mm. Shorter stems of lengths 95mm, 115mm and 125mm with offsets 35.5mm or less are available for patients with smaller femurs. Concern has been raised regarding the behaviour of the smaller implants. This paper analysed data from the Australian Orthopaedic Association National Joint Replacement Registry comparing survivorship of stems of offset 35.5mm or less with the standard stems of 37.5mm offset or greater. At seven years there was no significant difference in the Cumulative Percent Revision Rate in the short stems (3.4%, 95% CI 2.4-4.8%) compared with the standard length stems (3.5%, 95% CI 3.3-3.8%) despite its use in a greater proportion of potentially more difficult developmental dysplasia of the hip cases.

Towards a smart cancer registry

Aims Pathology notification for a Cancer Registry is regarded as the most valid information for the confirmation of a diagnosis of cancer. In view of the importance of pathology data, an automatic medical text analysis system (Medtex) is being developed to perform electronic Cancer Registry data extraction and coding of important clinical information embedded within pathology reports. Methods The system automatically scans HL7 messages received from a Queensland pathology information system and analyses the reports for terms and concepts relevant to a cancer notification. A multitude of data items for cancer notification such as primary site, histological type, stage, and other synoptic data are classified by the system. The underlying extraction and classification technology is based on SNOMED CT1 2. The Queensland Cancer Registry business rules3 and International Classification of Diseases – Oncology – Version 34 have been incorporated. Results The cancer notification services show that the classification of notifiable reports can be achieved with sensitivities of 98% and specificities of 96%5, while the coding of cancer notification items such as basis of diagnosis, histological type and grade, primary site and laterality can be extracted with an overall accuracy of 80%6. In the case of lung cancer staging, the automated stages produced were accurate enough for the purposes of population level research and indicative staging prior to multi-disciplinary team meetings2 7. Medtex also allows for detailed tumour stream synoptic reporting8. Conclusions Medtex demonstrates how medical free-text processing could enable the automation of some Cancer Registry processes. Over 70% of Cancer Registry coding resources are devoted to information acquisition. The development of a clinical decision support system to unlock information from medical free-text could significantly reduce costs arising from duplicated processes and enable improved decision support, enhancing efficiency and timeliness of cancer information for Cancer Registries.

Straightforward data management at QUT

QUT Library Research Support has simplified and streamlined the process of research data management planning, storage, discovery and reuse through collaboration and the use of integrated and tailored online tools, and a simplification of the metadata schema. This poster presents the integrated data management services a QUT, including QUT’s Data Management Planning Tool, Research Data Finder, Spatial Data Finder and Software Finder, and information on the simplified Registry Interchange Format – Collections and Services (RIF-CS) Schema. The QUT Data Management Planning (DMP) Tool was built using the Digital Curation Centre’s DMP Online Tool and modified to QUT’s needs and policies. The tool allows researchers and Higher Degree Research students to plan how to handle research data throughout the active phase of their research. The plan is promoted as a ‘live’ document’ and researchers are encouraged to update it as required. The information entered into the plan can be made private or shared with supervisors, project members and external examiners. A plan is mandatory when requesting storage space on the QUT Research Data Storage Service. QUT’s Research Data Finder is integrated with QUT’s Academic Profiles and the Data Management Planning Tool to create a seamless data management process. This process aims to encourage the creation of high quality rich records which facilitate discovery and reuse of quality data. The Registry Interchange Format – Collections and Services (RIF-CS) Schema that is used in the QUT Research Data Finder was simplified to “RIF-CS lite” to reflect mandatory and optional metadata requirements. RIF-CS lite removed schema fields that were underused or extra to the needs of the users and system. This has reduced the amount of metadata fields required from users and made integration of systems a far more simple process where field content is easily shared across services making the process of collecting metadata as transparent as possible.

Statistical analysis of the associations of hereditary factors with the risk of Type 1 diabetes and Diabetic Nephropathy based on the familial data collected through ascertaiment from population-based registers

In genetic epidemiology, population-based disease registries are commonly used to collect genotype or other risk factor information concerning affected subjects and their relatives. This work presents two new approaches for the statistical inference of ascertained data: a conditional and full likelihood approaches for the disease with variable age at onset phenotype using familial data obtained from population-based registry of incident cases. The aim is to obtain statistically reliable estimates of the general population parameters. The statistical analysis of familial data with variable age at onset becomes more complicated when some of the study subjects are non-susceptible, that is to say these subjects never get the disease. A statistical model for a variable age at onset with long-term survivors is proposed for studies of familial aggregation, using latent variable approach, as well as for prospective studies of genetic association studies with candidate genes. In addition, we explore the possibility of a genetic explanation of the observed increase in the incidence of Type 1 diabetes (T1D) in Finland in recent decades and the hypothesis of non-Mendelian transmission of T1D associated genes. Both classical and Bayesian statistical inference were used in the modelling and estimation. Despite the fact that this work contains five studies with different statistical models, they all concern data obtained from nationwide registries of T1D and genetics of T1D. In the analyses of T1D data, non-Mendelian transmission of T1D susceptibility alleles was not observed. In addition, non-Mendelian transmission of T1D susceptibility genes did not make a plausible explanation for the increase in T1D incidence in Finland. Instead, the Human Leucocyte Antigen associations with T1D were confirmed in the population-based analysis, which combines T1D registry information, reference sample of healthy subjects and birth cohort information of the Finnish population. Finally, a substantial familial variation in the susceptibility of T1D nephropathy was observed. The presented studies show the benefits of sophisticated statistical modelling to explore risk factors for complex diseases.

Centenarians and their hearts: a prospective registry with comprehensive geriatric assessment, electrocardiogram, echocardiography, and follow-up

Background Data on the cardiac characteristics of centenarians are scarce. Our aim was to describe electrocardiogram (ECG) and echocardiography in a cohort of centenarians and to correlate them with clinical data. Methods We used prospective multicenter registry of 118 centenarians (28 men) with a mean age of 101.5 ± 1.7 years. Electrocardiogram was performed in 103 subjects (87.3%) and echocardiography in 100 (84.7%). All subjects underwent a follow-up for at least 6 months. Results Centenarians with abnormal ECG were less frequently females (72% vs 93%), had higher rates of previous consumption of tobacco (14% vs 0) and alcohol (24% vs 12%), and scored lower in the perception of health status (6.8 ± 2.0 vs 8.3 ± 6.8). Centenarians with significant abnormalities in echocardiography were less frequently able to walk 6 m (33% vs 54%). Atrial fibrillation/flutter was found in 27 subjects (26%). Mean left ventricular (LV) ejection fraction was 60.0 ± 10.5%. Moderate or severe aortic valve stenosis was found in 16%, mitral valve regurgitation in 15%, and aortic valve regurgitation in 13%. Diastolic dysfunction was assessed in 79 subjects and was present in 55 (69.6%). Katz index and LV dilation were independently associated with the ability to walk 6 m. Age, Charlson and Katz indexes, and the presence of significant abnormalities in echocardiography were associated with mortality. Conclusions Centenarians have frequent ECG alterations and abnormalities in echocardiography. More than one fifth has atrial fibrillation, and most have diastolic dysfunction. Left ventricular dilation was associated with the ability to walk 6 m. Significant abnormalities in echocardiography were associated with mortality.

Validation of ICDPIC software injury severity scores using a large regional trauma registry.

BACKGROUND: Administrative or quality improvement registries may or may not contain the elements needed for investigations by trauma researchers. International Classification of Diseases Program for Injury Categorisation (ICDPIC), a statistical program available through Stata, is a powerful tool that can extract injury severity scores from ICD-9-CM codes. We conducted a validation study for use of the ICDPIC in trauma research. METHODS: We conducted a retrospective cohort validation study of 40,418 patients with injury using a large regional trauma registry. ICDPIC-generated AIS scores for each body region were compared with trauma registry AIS scores (gold standard) in adult and paediatric populations. A separate analysis was conducted among patients with traumatic brain injury (TBI) comparing the ICDPIC tool with ICD-9-CM embedded severity codes. Performance in characterising overall injury severity, by the ISS, was also assessed. RESULTS: The ICDPIC tool generated substantial correlations in thoracic and abdominal trauma (weighted κ 0.87-0.92), and in head and neck trauma (weighted κ 0.76-0.83). The ICDPIC tool captured TBI severity better than ICD-9-CM code embedded severity and offered the advantage of generating a severity value for every patient (rather than having missing data). Its ability to produce an accurate severity score was consistent within each body region as well as overall. CONCLUSIONS: The ICDPIC tool performs well in classifying injury severity and is superior to ICD-9-CM embedded severity for TBI. Use of ICDPIC demonstrates substantial efficiency and may be a preferred tool in determining injury severity for large trauma datasets, provided researchers understand its limitations and take caution when examining smaller trauma datasets.

Putting meaning into NETMAR – the open service network for marine environmental data

The open service network for marine environmental data (NETMAR) project uses semantic web technologies in its pilot system which aims to allow users to search, download and integrate satellite, in situ and model data from open ocean and coastal areas. The semantic web is an extension of the fundamental ideas of the World Wide Web, building a web of data through annotation of metadata and data with hyperlinked resources. Within the framework of the NETMAR project, an interconnected semantic web resource was developed to aid in data and web service discovery and to validate Open Geospatial Consortium Web Processing Service orchestration. A second semantic resource was developed to support interoperability of coastal web atlases across jurisdictional boundaries. This paper outlines the approach taken to producing the resource registry used within the NETMAR project and demonstrates the use of these semantic resources to support user interactions with systems. Such interconnected semantic resources allow the increased ability to share and disseminate data through the facilitation of interoperability between data providers. The formal representation of geospatial knowledge to advance geospatial interoperability is a growing research area. Tools and methods such as those outlined in this paper have the potential to support these efforts.

Refractory asthma in the UK: cross-sectional findings from a UK multicentre registry

Introduction: Refractory asthma represents a significant unmet clinical need where the evidence base for the assessment and therapeutic management is limited. The British Thoracic Society (BTS) Difficult Asthma Network has established an online National Registry to standardise specialist UK difficult asthma services and to facilitate research into the assessment and clinical management of difficult asthma.
Methods: Data from 382 well characterised patients, who fulfilled the American Thoracic Society definition for refractory asthma attending four specialist UK centres—Royal Brompton Hospital, London, Glenfield Hospital, Leicester, University Hospital of South Manchester and Belfast City Hospital—were used to compare patient demographics, disease characteristics and healthcare utilisation.
Results: Many demographic variables including gender, ethnicity and smoking prevalence were similar in UK centres and consistent with other published cohorts of refractory asthma. However, multiple demographic factors such as employment, family history, atopy prevalence, lung function, rates of hospital admission/unscheduled healthcare visits and medication usage were different from published data and significantly different between UK centres. General linear modelling with unscheduled healthcare visits, rescue oral steroids and hospital admissions as dependent variables all identified a significant association with clinical centre; different associations were identified when centre was not included as a factor.
Conclusion: Whilst there are similarities in UK patients with refractory asthma consistent with other comparable published cohorts, there are also differences, which may reflect different patient populations. These differences in important population characteristics were also identified within different UK specialist centres. Pooling multicentre data on subjects with refractory asthma may miss important differences and potentially confound attempts to phenotype this population.

Clinical management and outcome of refractory asthma in the UK from the British Thoracic Society Difficult Asthma Registry

Refractory asthma represents a significant unmet clinical need. Data from a national online registry audited clinical outcome in 349 adults with refractory asthma from four UK specialist centres in the British Thoracic Society Difficult Asthma Network. At follow-up, lung function improved, with a reduction in important healthcare outcomes, specifically hospital admission, unscheduled healthcare visits and rescue courses of oral steroids. The most frequent therapeutic intervention was maintenance oral corticosteroids and most steroid sparing agents (apart from omalizumab) demonstrated minimal steroid sparing benefit. A significant unmet clinical need remains in this group, specifically a requirement for therapies which reduce systemic steroid exposure.

Obesity associated severe asthma represents a distinct clinical phenotype - Analysis of the British Thoracic Society Difficult Asthma Registry patient cohort according to body mass index

BACKGROUND: Obesity has emerged as a risk factor for the development of asthma and it may also influence asthma control and airways inflammation. However, the role of obesity in severe asthma remains unclear. OBJECTIVE: To explore the association between obesity (defined by BMI) and severe asthma. METHODS: Data from the National Registry for dedicated UK Difficult Asthma Services were used to compare patient demographics, disease characteristics and healthcare utilisation between three body mass index (BMI) categories (normal weight: 18.5 -24.99, overweight: 25 -29.99, obese: =30) in a well characterised group of severe asthmatic adults. RESULTS: The study population consisted of 666 severe asthmatics with a median BMI of 29.8 (interquartile range 22.5 -34.0). The obese group exhibited greater asthma medication requirements in terms of maintenance corticosteroid therapy (48.9% versus 40.4% and 34.5% in the overweight and normal weight groups, respectively), steroid burst therapy and short-acting ß2-agonist (SABA) use per day. Significant differences were seen with gastro-oesophageal reflux disease (GORD) (53.9% versus 48.1% and 39.7% in the overweight and normal weight groups, respectively) and proton pump inhibitor (PPI) use. Bone density scores were higher in the obese group, whilst pulmonary function testing revealed a reduced FVC and raised Kco. Serum IgE levels decreased with increasing BMI and the obese group were more likely to report eczema, but less likely to have a history of nasal polyps. CONCLUSIONS: Severe asthmatics display particular characteristics according to BMI that support the view that obesity associated severe asthma may represent a distinct clinical phenotype.1Royal Brompton Hospital, London, UK;2Department of Computing, Imperial College, UK3Airways Disease, National Heart & Lung Institute, Imperial College, UK;4Centre for infection and immunity, Queen's University of Belfast, UK;5University of Leicester, UK;6The University of Manchester and University Hospital of South Manchester, UK;7Birmingham Heartlands Hospital, University of Birmingham, UK;8Gartnavel General Hospital, University of Glasgow, UK;9Glasgow Royal Infirmary, Glasgow, UKCorrespondence: Dr Andrew N. Menzies-Gow, Royal Brompton Hospital, Fulham Road, London SW3 6HP.

The UK Renal Registry Advanced CKD Study: frequency of incorrect reporting of date of start of RRT

Background: A preliminary review of the UK Renal Registry (UKRR) pre-RRT study data revealed results suggesting that, for some patients, the date of start of renal replacement therapy (RRT), as reported to the UKRR, was incorrect and often significantly later than the true date of start. A more detailed study then aimed to validate a set of criteria to identify patients with an incorrect start date. Methods: Pre-RRT laboratory data were electronically extracted from 8,810 incident RRT patients from 9 UK renal centres. Any patient with a low urea (<15 mmol/L) at the start of RRT or with a substantial improvement in kidney function (either a fall in urea >10 mmol/L or rise in eGFR >2 ml/min/1.73 m) within the two months prior to RRT were considered to potentially have an incorrect date of start. In 4
selected centres, the electronic patient records of all patients flagged were reviewed to validate these criteria.
Results: Of 8,810 patients, 1,616 (18.3%) were flagged by the identification criteria as having a potentially incorrect date of start of RRT, although a single centre accounted for 41% of the total flagged cohort. Of these flagged patients, 61.7% had been assigned an incorrect date of start of haemodialysis (HD), 5.7% had evidence of acute RRT being given before the reported date of start of HD
and 9.2% had evidence of starting peritoneal dialysis exchanges prior to the reported date of start. Of
those flagged, 10.7% had a correct date of start of RRT.
Conclusions: Accurate reporting of RRT episodes is vital for the analysis of time dependent studies such as survival or time to transplantation. A proportion of patients starting RRT were assigned an incorrect start date. In order to improve the accuracy of this reporting the UK Renal Registry
must work with renal centres and clinical staff on improving data input for the start of RRT.