National Reference Database Research Articles

Sleep-related breathing disorder in non-infectious pulmonary complications after pediatric allogeneic stem cell transplantation

BackgroundChronic lung problems are a rare but serious complication of allogeneic hematopoietic stem cell transplantation (HSCT). We studied clinical phenotypes and polysomnography appearance of breathing abnormality in late onset non-infectious pulmonary complications (NIPS).MethodsWe reviewed Finnish national reference database between the years 1999 and 2016. We identified 12 children with most severely decreased pulmonary function and performed polysomnography and 24 aged-matched controls out of 325 performed pediatric allogeneic HSCTs.ResultsAll patients with NIPS had severely decreased pulmonary function already at 6 months post HSCT with median FEV1 value 42% (interquartile range (IQR) 30–52%) of predicted normal values. Seven children had obstructive and five children more restrictive lung function. Children with obstructive lung function showed laborious breathing (7/7), decreased oxygenation and ventilation-to-perfusion mismatch (6/7), or REM-sleep-related hypoventilation (4/7) on polysomnography. Children with restrictive lung function (5/12) did not show sleep-related breathing disorder.ConclusionsChildren going through allogeneic HSCT who develop severe chronic obstructive lung function are more likely to present with sleep-related hypoxia and hypoventilation than children with restrictive lung function.ImpactChildren with severe obstructive lung function and chronic lung graft-versus-host disease following hematopoietic stem cell transplantation are more likely to present with sleep-related mild hypoxia and hypoventilation than children with restrictive lung disease.To our knowledge there are no reports on sleep-related breathing disorders and ventilatory function measured by polysomnography in children with pulmonary complications after allogeneic HSCT.Polysomnography may add to the differential diagnostics between patients with BOS and other non-infectious pulmonary complications.

Managing groundwater resources using a national reference database: the French ADES concept

Groundwater is an integral part of the water cycle and an essential human resource. Humans must protect this ever-changing heritage and preserve it in a sustainable way by understanding the physical and chemical properties of aquifers and monitoring their quantity and quality. Numerous studies have collected immense volumes of data that are difficult to access and not always comparable or of adequate quality. A pioneering national-scale database, ADES, was created in 1999 to store and make available quality data on French groundwater. This tool is freely accessible for/to water managers, scientists and the public. The data management system used in the database satisfies two important objectives: it is interoperable and based on a recognised groundwater reference system and provides high quality data to a large public. Data from different producers require normalisation and standardisation of system requirements to allow data integration and exchange. The database designers set up shared data models, and based the system on communal repositories of water points and hydrogeological entities. Nearly 102 million groundwater quality records and over 17 million water-level records are currently available, describing almost 61,800 stations. ADES makes it possible to visualise in “real-time" water level data for approximately 1500 stations equipped with GPRS (General Packet Radio Service) technology. ADES also provides, on a public website and via web services, public quantitative and qualitative data. ADES is an essential tool for developing groundwater services based on the FAIR guiding principles: Findable, Accessible, Interoperable and Reusable data (Wilkinson et al. in SD 3:160018, 2016)Article highlightsA unique database for storing and disseminating reliable, comprehensive, and up-to-date groundwater data to a large public.An interoperable system based on a common reference system to ensure data reliability.An interoperable system based on a common reference system to ensure data reliability.

A retrospective analysis of all-cause and cause-specific mortality rates in French male professional footballers.

This study retrospectively compared all-cause and cause-specific mortality in French male professional football players with data from France's national population. Altogether, 6114 individuals born in Metropolitan France or in one of its overseas territories who played at least one competitive match in France's professional football championships between January 1, 1968 and December 31, 2015, were identified and followed up for vital status obtained from a national reference database until December 31, 2015. Data on all-cause and cause-specific mortality were subsequently compared to the expected number of deaths for the national population after standardization for the year, age, and sex. Ratios between observed and expected deaths provided standardized mortality ratios (SMR) along with 95% confidence intervals (95% CI). Linear trends were investigated using the Poisson trend test. Altogether, 662 player deaths were observed. All-cause mortality overall was lower than that of the national population (SMR: 0.69, 95% CI 0.64-0.75). An excess of deaths from dementia was observed in the players (SMR: 3.38, 95% CI: 2.49-4.50) whereas mortality from diseases of the nervous (SMR: 0.64, 95% CI: 0.35-1.08) and cardiovascular systems (SMR: 0.82, 95% CI: 0.70-0.96), and cancer (SMR: 0.67, 95% CI: 0.58-0.76) was lower. Lower overall mortality and that owing to common cardiovascular and cancer-related diseases were reported in French professional football players compared to France's national population. In line with previous studies, however, excess mortality from dementia was observed in the players. Career length was not associated with all-cause or cause-specific mortality. Prospective matched-cohort studies are necessary to identify the neurologic impact of participation in professional football.

Assessing the readiness of Turkish health information systems for integrating genetic/genomic patient data: System architecture and available terminologies, legislative, and protection of personal data

Advances in genetic/genomic research and translational studies drive the progress on molecular diagnosis, personalised treatment, and monitoring. Healthcare professionals and governments are encouraged to set administrative regulations and implement structured and interoperable representation to utilise the genetic/genomic data, which will support precision medicine approaches through Health Information Systems (HIS). Clear regulations and careful legislation are also crucial for the security and privacy of genetic/genomic test data. In this article, we present a review of the National Health Information System of Turkey (NHIS-T) about interoperable health data representation for genetic tests. We discuss the content of rules and regulations related to genetic/genomic testing and structured data representation in Turkey. A brief comparison of the Turkish “Law on the Protection of Personal Data” (LPPD) in genetic/genomic data privacy with its counterparts is presented. The final discussion about the shortcomings of Turkey is transferable to health information systems worldwide. Constructing a national reference database and IT infrastructure to enable data integration and exchange between genomic data, metadata, and health records will improve genetics studies’ utility and outcomes. The critical success factors behind integration are establishing broadly accepted terminologies and government guidance. The governments should set clear a transparent policy defining the legal and ethical framework, workforce training, clinical decision-support tools, public engagement, and education concurrently.

Comparative genomic fingerprinting of Campylobacter: application in routine public health surveillance and epidemiological investigations.

A subtyping methodology for Campylobacter, Comparative Genomic Fingerprinting (CGF40), has been described recently. The objective of this study was to assess the utility of CGF40 as a tool to enhance routine public health surveillance of campylobacteriosis. Isolates of Campylobacter from across the province were requested and sent for CGF40 subtyping. Epidemiological data from cases reported to public health officials in Nova Scotia, Canada, from January 2012 to March 2015 were linked with blinded CGF40 subtyping results. CGF40 was epidemiologically valid; subtyping discerned known epidemiologically related isolates and augmented case-finding. Predominant sources and locations of subtype detection from the national reference database showed some study subtypes were rare and even novel to the database, while others were more commonly identified over multiple years and with exposures locally and internationally. A case-case study design was applied to examine risk factors for the most common CGF40 subtypes detected. Differences in the epidemiology of different CGF40 subtypes were observed. Statistically significant associations were noted for specific subtypes with rural residence, local exposure, contact with a pet dog or cat, contact with chickens, and drinking unpasteurized milk. With prospective use, CGF40 could potentially identify unrecognized outbreaks and contribute to epidemiological investigations of case clusters.

High-quality mtDNA control region sequences from 680 individuals sampled across the Netherlands to establish a national forensic mtDNA reference database

The use of mitochondrial DNA (mtDNA) for maternal lineage identification often marks the last resort when investigating forensic and missing-person cases involving highly degraded biological materials. As with all comparative DNA testing, a match between evidence and reference sample requires a statistical interpretation, for which high-quality mtDNA population frequency data are crucial. Here, we determined, under high quality standards, the complete mtDNA control-region sequences of 680 individuals from across the Netherlands sampled at 54 sites, covering the entire country with 10 geographic sub-regions. The complete mtDNA control region (nucleotide positions 16,024–16,569 and 1–576) was amplified with two PCR primers and sequenced with ten different sequencing primers using the EMPOP protocol. Haplotype diversity of the entire sample set was very high at 99.63% and, accordingly, the random-match probability was 0.37%. No population substructure within the Netherlands was detected with our dataset. Phylogenetic analyses were performed to determine mtDNA haplogroups. Inclusion of these high-quality data in the EMPOP database (accession number: EMP00666) will improve its overall data content and geographic coverage in the interest of all EMPOP users worldwide. Moreover, this dataset will serve as (the start of) a national reference database for mtDNA applications in forensic and missing person casework in the Netherlands.

The national nosocomial surveillance network in Hungary: results of two years of surgical site infection surveillance

In 2004, a secure web-based national nosocomial infection surveillance system was established in Hungary. The system, named NNSR (Nemzeti Nosocomiális Surveillance Rendszer), is based on the US National Nosocomial Infection Surveillance System (NNIS). Surgical procedures, definitions, surveillance methodology and patient risk indices are those established by NNIS. In this paper, we present the results of the first two years of the surgical patient component of our system. During this period, 41 hospitals participated and selected 11 surgical procedures for surveillance. Altogether 15812 procedures were surveyed and 360 resulting surgical site infections (SSI) were recorded. The overall SSI rate was 2.27%. The most commonly selected procedures and corresponding SSI rates were caesarean section (1.31%), herniorrhaphy (2.09%), cholecystectomy (1.52%) and hip replacement (2.91%). Standardised infection ratios (SIR) were calculated for chosen surgical procedures in order to compare against NNIS published rates. SSI rates for colonic surgery, caesarean section and mastectomy were lower than expected according to the NNIS data but higher for cholecystectomy, herniorrhaphy and hip prosthesis infection rates. We intend to recruit more participating hospitals, leading to a robust national database that can be used to target infection control interventions for patients in Hungary.

Five years working with the German nosocomial infection surveillance system (Krankenhaus Infektions Surveillance System)

A national surveillance system for nosocomial infections, Krankenhaus Infektions Surveillance System (KISS), was established in Germany as a joint effort by the National Reference Center for Hospital Epidemiology (currently called the National Reference Center for the Surveillance of Nosocomial Infections) and the Robert Koch Institute. To begin with a well-accepted and proven method, surveillance protocols were developed on the basis of the National Nosocomial Infections Surveillance system. Hospitals from all parts of Germany took part voluntarily. There were 4 surveillance components: intensive care departments (227), patients undergoing operation (231 departments), neonatal intensive care departments (23 hospitals), and patients undergoing bone marrow and peripheral blood stem cell transplants (10 hospitals). Five years after the introduction of KISS many hospitals have introduced continuous surveillance activities whereby the various definitions and methods have attained wide acceptance. This has lead to much better understanding and cooperation between clinicians and infection control personnel in preventing nosocomial infections. KISS is considered the national reference database, but continuous evaluation and development of KISS are necessary to react adequately. (Am J Infect Control 2003;31:316-21.)

Patient assessment using standardized bone mineral density values and a national reference database: implementing uniform thresholds for the reimbursement of osteoporosis treatments in Belgium.

Dual-energy X-ray absorptiometry (DXA) devices from the three main manufacturers provide different bone mineral density (BMD) values, due in part to technical differences in the algorithms for bone mineral content (BMC) and area measurements and in part to the use of different manufacturer-derived reference databases. As a result, significant differences exist between Hologic, Lunar and Norland systems in the reported young normal standard deviation scores or T-scores. In a number of European countries, including Belgium, a T-score below -2.5 is one of the key criteria for reimbursement of osteoporosis treatments. This paper addresses the first attempt to implement a nationwide, uniform expression of BMD in patients, in order to harmonize drug reimbursement. To this end, measures were taken to implement a uniform expression of BMD in Belgian patients, by converting each manufacturer's absolute BMD to standardized BMD (sBMD) values and by establishing a single national reference range.

Referral patterns and utilization of physiotherapy services following a one-time physiotherapist consultation in general practice

The purpose of this study was to describe the influence of a one-time consultation of physiotherapists (PTs) by primary care physicians (PCPs) on utilization of physiotherapy services, functional outcomes, and number of treatment sessions per treatment episode. A 7-month observational study with 59 pairs of randomly selected PTs and PCPs was conducted, with a prospective follow-up study of patients being referred for physiotherapy (treatment) after the consultation. The main variables measured were: (1) characteristics of patients who were referred for physiotherapy after consultation compared to those who were not referred for physiotherapy after consultation; (2) number of sessions per treatment episode predicted by the consulting PT compared to the actual number; and (3) functional outcomes of physiotherapy. The primary study sample consisted of 352 patients referred for a one-time PT consultation. Of these patients 224 were referred for physiotherapy treatment after consultation. Patterns of referral for physiotherapy after consultation were positively related ( p <0.05) with increased age, lower levels of education, longer duration of complaints, and a decrease in physical functioning in terms and number of impairments and disabilities. Functional outcomes were better than data of the national reference database of patients directly referred by PCPs for physiotherapy treatment. The mean number of sessions per treatment episode, including the one-time consultation, was lower ( p <0.05).

Impact médico-économique du PMSI sur les séjours pour infarctus du myocarde : influence de la qualité du recueil et de la durée d'hospitalisation

The aim of the Medicalisation Program of the Information System was to describe the activity of hospital for budget allocation. This work concerned the whole hospitalizations in the unit of intensive care of cardiology of Dijon for a myocardial infarction (MI) during the 1st half of 1998 (59 patients). The objectives of this study were: 1) the estimate of the real cost of MI management; 2) the comparison of this cost with the reference cost, determined from the data of the National Basis of Costs (BNC); 3) the economic impact of the quality of coding. The real global cost of MI was estimated at 2 323 542 FF (average by patient: 39 382±15 718 FF). Sixty eight per cent of the costs are directly related to the standing fixed overheads; in contrast, the medical and the therapeutic acts accounted for only 32% of the estimated real cost. A 52% over-estimation was highlighted between the estimated real cost and the cost of reference ( p<0.001). The errors of coding accounted for an under-estimation of only 3.6% of the cost of reference. The duration of hospitalization was significantly higher than the stay length taken from the national reference database (12.9±5.4 versus 9.2±2.1 days: p<0.001), and was mainly responsible for these discrepancies of costs.

The Spanish National Reference Database for Ionizing Radiations (BANDRRI)

The Spanish National Reference Database for Ionizing Radiations (BANDRRI) is being implemented by a reasearch team in the frame of a joint project between CIEMAT (Unidad de Metrologı́a de Radiaciones Ionizantes and Dirección de Informática) and the Universidad Nacional de Educación a Distancia (UNED, Departamento de Mecánica y Departamento de Fı́sica de Materiales). This paper presents the main objectives of BANDRRI, its dynamic and relational data base structure, interactive Web accessibility and its main radionuclide-related contents at this moment.

Measuring Outcomes in Psychiatry: An Inpatient Model

This article describes a system for measuring outcomes recently implemented in the department of psychiatry of Baptist Memorial Hospital, a 78-bed inpatient and day treatment unit that represents one service line of a large, urban teaching hospital in Memphis. In June 1993 Baptist Hospital began a 15-month pilot test of PsychSentinel, a measurement tool developed by researchers in the Department of Community Medicine at the University of Connecticut. The hospital identified the following four primary goals for this pilot project: provide data for internal hospital program evaluation, provide data for external marketing in a managed care environment, satisfy requirements of the Joint Commission on Accreditation of Health Care Organizations, and generate studies that add to the literature in psychiatry and psychology. PsychSentinel is based on the standardized diagnostic criteria in the Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV). The outcome measure assesses the change in the number of symptoms of psychopathology that occurs between admission and discharge from the hospital. Included in the nonproprietary system are risk adjustment factors, as well as access to a national reference database for comparative analysis purposes. Data collection can be done by trained ancillary staff members, with as much or as little direct physician involvement as desired. The system has proven to be both time effective and cost effective, and it provides important outcome information both at the program level and at the clinician level. After the pilot test, the staff at Baptist Memorial Hospital determined that the system met all initial objectives identified and recently adopted the system as an ongoing measure of quality patient care in the department of psychiatry.