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Mixed effects logistic regression models for longitudinal binary response data with informative drop-out.

A shared parameter model with logistic link is presented for longitudinal binary response data to accommodate informative drop-out. The model consists of observed longitudinal and missing response components that share random effects parameters. To our knowledge, this is the first presentation of such a model for longitudinal binary response data. Comparisons are made to an approximate conditional logit model in terms of a clinical trial dataset and simulations. The naive mixed effects logit model that does not account for informative drop-out is also compared. The simulation-based differences among the models with respect to coverage of confidence intervals, bias, and mean squared error (MSE) depend on at least two factors: whether an effect is a between- or within-subject effect and the amount of between-subject variation as exhibited by variance components of the random effects distributions. When the shared parameter model holds, the approximate conditional model provides confidence intervals with good coverage for within-cluster factors but not for between-cluster factors. The converse is true for the naive model. Under a different drop-out mechanism, when the probability of drop-out is dependent only on the current unobserved observation, all three models behave similarly by providing between-subject confidence intervals with good coverage and comparable MSE and bias but poor within-subject confidence intervals, MSE, and bias. The naive model does more poorly with respect to the within-subject effects than do the shared parameter and approximate conditional models. The data analysis, which entails a comparison of two pain relievers and a placebo with respect to pain relief, conforms to the simulation results based on the shared parameter model but not on the simulation based on the outcome-driven drop-out process. This comparison between the data analysis and simulation results may provide evidence that the shared parameter model holds for the pain data.

Analgesics↗

Suggestive evidence for a schizophrenia susceptibility locus on chromosome 6q and a confirmation in an independent series of pedigrees.

We have investigated whether there is a locus on chromosome 6 that confers an increased susceptibility to schizophrenia using a two-stage approach and nonparametric linkage analysis. Allele sharing identical by descent (IBD) and multipoint maximum likelihood score (MLS) statistics were employed. Results from two tested data sets, a first data set, or genome scanning data set, and a second replication data set, show excess allele sharing for multiple markers in 6q, a chromosomal region not previously reported as linked to schizophrenia. In our genome scanning data set, excess allele sharing was found for markers on 6q13-q26. The greatest allele sharing was at interval 6q21-q22.3 at marker D6S416 (IBD percentage 69; P = 0.00024). The multipoint MLS values were greater than 2.4 in the 11.4-cM interval delimited by D6S301 and D6S303, with a maximum value of 3.06 close to D6S278 and of 3.05 at D6S454/D6S423. We did not confirm, however, the previously described linkage in 6p, when tested in the systematic genome scanning data set. The replication data set also showed excess allele sharing in chromosomal area 6q13-q26, which overlapped with the aforementioned positive linkage area of the genome scanning data set. The highest sharing of the second data set was at D6S424 (IBD percentage 64; P = 0.0004), D6S283 (IBD percentage 62; P = 0.0009), and D6S423 (IBD percentage 63; P = 0.0009). Multipoint MLS analysis yielded MLS values greater than 1 in an area of about 35 cM, which overlaps with the MLS multipoint area of linkage from the genome scanning data set. The multipoint MLS at the D6S454/D6S423 locus was 2.05. In the second data set, the maximum multipoint MLS was located about 10 cM centromeric from the maximum of the genome scanning data set, at the interval D6S424-D6S275 (2.35). Our results provide very suggestive evidence for a susceptibility locus for schizophrenia in chromosome 6q from two independent data sets.

Alleles↗

NCL: a C++ class library for interpreting data files in NEXUS format.

UNLABELLED: The NEXUS Class Library (NCL) is a collection of C++ classes designed to simplify interpreting data files written in the NEXUS format used by many computer programs for phylogenetic analyses. The NEXUS format allows different programs to share the same data files, even though none of the programs can interpret all of the data stored therein. Because users are not required to reformat the data file for each program, use of the NEXUS format prevents cut-and-paste errors as well as the proliferation of copies of the original data file. The purpose of making the NCL available is to encourage the use of the NEXUS format by making it relatively easy for programmers to add the ability to interpret NEXUS files in newly developed software. AVAILABILITY: The NCL is freely available under the GNU General Public License from http://hydrodictyon.eeb.uconn.edu/ncl/ SUPPLEMENTARY INFORMATION: Documentation for the NCL (general information and source code documentation) is available in HTML format at http://hydrodictyon.eeb.uconn.edu/ncl/

Databases, Bibliographic↗

Decreased HLA heterogeneity in parents of children with Down syndrome.

HLA-A and B antigens were determined in a study of 37 couples and their children with trisomy 21 Down syndrome (DS), using a standard microlymphocytotoxicity test. The comparison groups included 76 couples and their healthy children. All individuals were Caucasians from the same geographical area, and there was no history of consanguinity. The parents of children with DS did not show an association with a specific HLA antigen or haplotype. Sixteen of the 37 couples (43.24%) having children with DS share two or more antigens at the A and/or B locus. This was significantly higher than the proportion in the control group (6/76, or 7.88%). Of the 16 couples having children with DS and sharing two or more antigens, eight had a haplotype in common, in contrast with only two couples in the control group. The data suggest that sharing of parental HLA-A and B antigens may be related either to the occurrence of trisomy 21 zygotes or to prenatal survival of affected embryos and fetuses.

Adult↗

A statewide collaboration to monitor diabetes quality improvement among Wisconsin health plans.

OBJECTIVE: The Wisconsin Collaborative Diabetes Quality Improvement Project was initiated in 1999 by the Wisconsin Department of Health and Family Services, Diabetes Prevention and Control Program to monitor quality of diabetes care among the state's health plans. STUDY DESIGN: Prospective observational. METHODS: Annual invitations were mailed to all Wisconsin managed care plans to participate in the project. Collaborators submitted Comprehensive Diabetes Care Health Plan Employer Data and Information Set (HEDIS) measures, as well as other selected HEDIS measures. Data were summarized and reported anonymously back to the collaborators at quarterly forums and in annual reports. RESULTS: Five of the 6 Comprehensive Diabetes Care HEDIS measures have improved significantly in Wisconsin since 1999. Despite this improvement, measure variation across health plans remains high. Collaborators have continued to share resources and best practices at quarterly forums and through statewide initiatives. CONCLUSIONS: This project is an example of an ongoing statewide collaborative quality improvement effort among otherwise competing health plans. Collaboration at regular forums, sharing of HEDIS data to assess quality of diabetes care in health plans, and sharing of resources and best practices may have contributed to improvements in the quality of diabetes care in Wisconsin.

Cooperative Behavior↗

National Electronic Disease Surveillance System (NEDSS): a standards-based approach to connect public health and clinical medicine.

The National Electronic Disease Surveillance System is a broad initiative focused on the use of data and information systems standards to advance the development of efficient, integrated, and interoperable surveillance systems at the state and local levels facilitating sharing of appropriate data across jurisdictions. This initiative is designed to facilitate the electronic transfer of information needed for public health from clinical information systems in the health care industry, to reduce provider burden in the provision of information, and to enhance both the timeliness and quality of information provided.

Centers for Disease Control and Prevention, U.S.↗

Grade-of-membership sibpair linkage analysis maps IDDM11 to chromosome 14q24.3-q31.

We demonstrate the use of Grade-of-membership (GoM) (Manton et al. 1994) for sibpair linkage analysis: GoM was used to map the IDDM11 locus to the region of chromosome 14q24.3 identified by Field et al. (1996). Haplotype groups were constructed from sib pair information on the number of shared alleles. The sample consisted of 578 sibling pairs found in 246 multiplex IDDM families. Both siblings were diabetic in 53% of the pairs (AA). Pair members could share 0, 1 or 2 alleles IBS at each of eight linked marker loci spanning IDDM11. Three model-based groups best represented the data on allele sharing: the groups corresponded to 'No', 'One' and 'Two' shared haplotypes for the region. Group 'Two' was larger (37% vs. 25%, p < 0.0001) and more homogeneous (p < 0.0001) than expected by chance consistent with the IDDM11 locus being a determinant of diabetes in multiplex families. Genetic linkage of IDDM to the region was demonstrated by a 19% increase in the proportion of AA pairs over the haplotype groups: 'No', 42%; 'One', 49%; 'Two', 61%, p = 0.0005, representing a 43% relative increase.

Alleles↗

ExpoFacts--an overview of European exposure factors data.

European exposure factor data have been collected in one centrally available, freely accessible site on the Internet: the ExpoFacts database (http://www.ktl.fi/expofacts/). The process of compiling the database required locating the exposure factor data and evaluating its general applicability and public availability. The scope of the ExpoFacts database covers 30 European countries, often each with its own approach for data generation and publication. The database includes information on food intake, time use, physiology, housing, and demographic parameters, as available. Information included in the database, as well as the challenges in collecting and compiling this information, are summarized. Data were found to be unavailable for ExpoFacts for a number of reasons: (1) data have not been collected, (2) collected data are not published, (3) the publishing format or language makes the data hard to locate and use, (4) copyright restrictions prevent presenting the data in an open access website, or (5) data exist, but are too expensive to acquire. Improving accessibility and harmonization of existing data would enhance the information base for exposure and risk assessments. In addition, the ExpoFacts project demonstrates a successful process for acquiring, storing, and sharing exposure factors data.

Databases, Factual↗

Benchmarking process: select targets for change.

Previously uncollected data will be used to fuel ongoing improvement. Aggregate data will be shared with all 239 participating facilities. Member survey identifies most beneficial areas to target.

Benchmarking↗

Medical Data GRIDs as approach towards secure cross enterprise document sharing (based on IHE XDS).

Quality and efficiency of health care services is expected to be improved by the electronic processing and trans-institutional availability of medical data. A prototype architecture based on the IHE-XDS profile is currently being developed. Due to legal and organizational requirements specific adaptations to the IHE-XDS profile have been made. In this work the services of the health@net reference architecture are described in details, which have been developed with focus on compliance to both, the IHE-XDS profile and the legal situation in Austria. We expect to gain knowledge about the development of a shared electronic health record using Medical Data Grids as an Open Source reference implementation and how proprietary Hospital Information systems can be integrated in this environment.

Austria↗

Gordonia defluvii sp. nov., an actinomycete isolated from activated sludge foam.

Three strains of non-motile, Gram-positive, filamentous actinomycetes, isolates J4(T), J5 and J59, initially recognized microscopically in activated sludge foam by their distinctive branching patterns, were isolated by micromanipulation. The taxonomic positions of the isolates were determined using a polyphasic approach. Almost-complete 16S rRNA gene sequences of the isolates were aligned with corresponding sequences of representatives of the suborder Corynebacterineae and phylogenetic trees were inferred using three tree-making algorithms. The organisms formed a distinct phyletic line in the Gordonia 16S rRNA gene tree. The three isolates showed 16S rRNA gene sequence similarities within the range 96.9-97.2 % with their nearest phylogenetic neighbours, namely Gordonia bronchialis DSM 43247(T) and Gordonia terrae DSM 43249(T). Strain J4(T) was shown to have a chemotaxonomic profile typical of the genus Gordonia and was readily distinguished from representatives of the genus on the basis of Curie-point pyrolysis mass spectrometric data. The isolates shared nearly identical phenotypic profiles that distinguished them from representatives of the most closely related Gordonia species. It is evident from the genotypic and phenotypic data that the three isolates belong to a novel Gordonia species. The name proposed for this taxon is Gordonia defluvii sp. nov.; the type strain is J4(T) (=DSM 44981(T)=NCIMB 14149(T)).

Bacterial Typing Techniques↗

CARREL: an internet platform for the distribution of human organs for transplantation.

BACKGROUND: Human organs for transplant from a deceased donor are presently distributed in Spain by means of manual handling and telephone or fax transmission of data. This procedure is conducted organ by organ with the information transmitted sequentially. This process has several inherent drawbacks, the main one being the long length of time to allocate organs on many occasions. A difficulty of this type could be solved by means of an electronic system of data management and transmission through the Internet. CARREL is a platform that could provide an alternative organ distribution procedure. The main objective of CARREL was to increase the efficiency, safety, rapidity, and quality of organ distribution for transplantation, thereby helping the allocation process. MATERIALS AND METHODS: CARREL is a database system, accessible through the Internet, to which any medical center authorized to perform organ transplants in Spain may subscribe. CARREL allows information share between centers, including administrative, anthropometric, immunological, analytical, and clinical data, as well as parameters concerning donor maintenance. CONCLUSIONS: CARREL is an online system that can reduce organ distribution time, directly store complete information concerning the donor, and also share data between centers. It facilitates communication between transplant coordinators at different centers, thereby improving and hastening candidate selection.

Databases, Factual↗

Reliability and construct validity of the needle sharing inventory.

The Needle Sharing Inventory (NSI) is a 59-item test developed to specify and assess behavior patterns associated with drug use and needle sharing. In order to determine its reliability and construct validity, the NSI was administered to 80 intravenous drug users (IVDUs) recruited from a methadone maintenance program in New York City. Patients were included in the study if they reported using intravenous drugs during the previous month. Factor analysis was performed indicating that 31 of the items loaded onto 6 factors similar to those hypothesized: four dealing with the social context of needle sharing - indiscriminate sharing, social sharing, intimate sharing, and use of shooting galleries; and two dealing with the emotional context of intravenous drug use negative affect states and positive affect states. These variables accounted for 71% of the total variance, suggesting internal consistency of these items. Factor scores significantly correlated to subjects' self-reported estimates of time using nonsterile needles and sharing needles. These data suggest that the NSI is both a reliable and a valid measure which may be used in future studies of intravenous drug use and needle sharing behavior patterns. The NSI may prove useful for the purpose of developing and evaluating interventions aimed at preventing or reducing the spread of HIV through needle sharing.

Adult↗

Automatic record keeping in anaesthesia--a nine-year Italian experience.

In 1986, in Buccheri La Ferla Hospital, Palermo, an anaesthesia information management project was started. Its aim was to develop a computerized anaesthesia workstation. Today, the system is in daily clinical use and has reached most of its original goals: Automatic collection of physiological signals and patient monitor trends is possible by means of analog-digital conversion or by using serial data transfer. A centralized display is included in the system to allow easy control of the progress of the anaesthetic procedures in the hospital. Available in the workstation, there is an on-line help function to assist pharmacological calculations and administration of anaesthesia drugs. Mail messages can be sent to different anaesthesia workstations and data can be shared between them. Information collected during preoperative visits is automatically transferred from a portable personal computer to the system. There is a nine-year patient data-base with both preoperative and perioperative anaesthesia information which can be accessed from each of the workstations. Today, the system is in daily routine use and comprises eight anaesthesia workstations and two portable personal computers used for preoperative visits. The operation schedule with anaesthetists' notes is printed both for surgical wards and for O.R., using information stored from preoperative visits to the system. For automated data collection a trend resolution of one minute has been used. The postoperative orders are printed from the system in the recovery room and given to the wards with the patient. The feedback from the seventeen anaesthetists and twenty-four nurses who use the system routinely is positive. Today, 16,000 patient records are available in the database. This number increases by 3,300 every year. With increasing computer utilization in patient treatment there have been no legal or administrative controversies. Based on nine years' experience, it is clear that the use of computers in anaesthesia practice improves quality of patient care.

Analog-Digital Conversion↗

The computerized patient record: balancing effort and benefit.

PROMISE AND REALITY: this review addresses two questions. First, why is the introduction of the computerized patient record (CPR) so slow, while its potential for improved quality of care and reduction of cost is well recognized? Second, what, in this respect, is the role of record architecture and standardization? BARRIERS: the impediments for CPR adoption are put in a larger context by addressing the relationship among effort, benefit, and the parties involved. An important financial impediment is insufficient return of investment. Other hurdles related to the use of CPRs are lack of integration and flexibility, which cause clinicians to experience insufficient reward to motivate them for data entry and changes in working style. Effort and benefit have to be balanced for each party involved. REQUIREMENTS FOR IMPROVEMENT: lack of standardization impedes exchange and sharing of medical data, and new developments cause fear of applications to become outdated. Flexibility in content and use, integration, and adaptability to change, are key requirements for CPR systems. These requirements can most effectively be met through an architecture that separates content and structure, such that the road to standardization is not paved with frequent expensive adaptations. STRATEGIES FOR IMPLEMENTATION: successful implementation and acceptance require reliable evaluation of applications by independent professional groups. Users need to be involved in setting priorities and planning for actual implementation.

Cost Control↗

Personal privacy in the health care system: employer-sponsored insurance, managed care, and integrated delivery systems.

Widespread collection and use of identifiable information can promote social goods while, at the same time, infringing on personal privacy. Information systems are developing within the context of a fundamental transformation in the organization, delivery, and financing of health care. Changes in the health care system include rapid development of employer-sponsored health coverage, managed care organizations, and integrated delivery systems. These complex, multifaceted arrangements for delivering and paying for health care require ever-more-sophisticated information systems that facilitate extensive sharing of personal data. Systemic flows of sensitive health information occur both vertically and horizontally among employers, hospitals, insurers, laboratories, and suppliers. Beyond this complex web of vertical and horizontal sharing are the multiple demands for information management, quality assurance, research, governmental regulation, and public health. Theoretical problems exist with the law and ethics of informational privacy. The traditional method of exercising control over personal health information is through informed consent. Informed consent, however, within a modern health information infrastructure becomes highly complex. In this kind of environment, the doctrine of informed consent is flawed and does not provide sufficient control over personal information to assure adequate protection of privacy.

Biomedical Research↗

Sharing information and experiences about maternal and child health data sets through the World Wide Web.

Maternal and child health programs face increasing requirements to collect, analyze, and disseminate information on current health status and needs of population groups. Data sets vary according to data elements. Population groups, organizational and agency boundaries, and other situation-specific characteristics. Until recently, the major venue for sharing information about various dimensions of data sets has been informal, often word-of-mouth, communications. The World Wide Web provides an opportunity to replace these slow and incomplete information exchanges with instant and comprehensive ones. This article outlines the development of a web site that includes descriptive information about 12 MCH data sets.

Adult↗