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Results for “data sharing”

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At least 1,009 records · Page 56Linked to original sources
PubMed2004

Lack of association of the HLA-DRB1 shared epitope with rheumatoid nodules: an individual patient data meta-analysis of 3,272 Caucasian patients with rheumatoid arthritis.

OBJECTIVE: The objective of this individual patient data (IPD) meta-analysis was to examine the relationship of rheumatoid nodules to the HLA-DRB1 shared epitope (SE) and to individual SE genotypes. METHODS: English-language studies that enrolled adult non-Hispanic Caucasian patients with rheumatoid arthritis (RA) were identified by searches of Medline and Embase, and by manual searches of medical journals. All authors were contacted for IPD. Meta-analysis was performed to assess the association of SE presence, dose, and genotype with rheumatoid nodules. Meta-analyses adjusted for disease duration and cumulative meta-analyses were also performed to assess the influence of RA duration and year of study publication on the results. RESULTS: A total of 24 studies and 3,272 patients were available for analysis. IPD were obtained for 22 of the studies. There was a nonsignificant association between the presence of the SE (i.e., 1 or 2 alleles versus 0 alleles) and rheumatoid nodules (summary odds ratio [OR] 1.3, 95% confidence interval [95% CI] 0.97-1.6). Analysis by SE genotype, however, demonstrated a weak relationship with inheritance of a single DRB1*0401 SE allele (OR 1.4, 95% CI 1.1-1.8). No other genotypes achieved statistical significance in the adjusted or unadjusted analyses. CONCLUSION: The presence of the HLA-DRB1 SE does not appear to significantly increase the risk of rheumatoid nodules among Caucasian patients with RA. Analysis by DRB1 SE genotype was uninformative, suggesting only a potential (and at most modest) role of the DRB1*0401 SE allele. Results from this IPD meta-analysis implicate other genetic, stochastic, and/or environmental factors in the susceptibility to rheumatoid nodules.

Aged↗
PubMed2005

Encrypted storage of medical data on a grid.

OBJECTIVES: In this article we present grids as an architecture for medical image processing and health-care networks. We argue that confidential patient data should not be stored unprotected on a grid and explain why access control systems alone do not offer sufficient protection. The objective of our work is to propose a method that complements access control systems on a grid architecture and thus makes the storage of confidential data more secure. METHODS: Effective protection can be achieved by storing confidential data in encrypted form. This raises the problem of how authorized users get access to the data, since they need to have the decryption keys. RESULTS: Our proposal details a key management architecture, that allows encrypted storage and still enables users to access decryption keys for data they are authorized to see. To achieve this functionality we use distributed keyservers storing redundant shares of the keys. CONCLUSIONS: The resulting architecture achieves our primary objective of making the storage of confidential data more secure without loosing the data sharing properties of the grid architecture. Furthermore our architecture is robust against breakdowns and denial of service attacks. It scales well with the number of users and does not introduce a single point of failure into the system.

Access to Information↗
PubMed2003

Refinement of the critical region for MCKD1 by detection of transcontinental haplotype sharing.

BACKGROUND: Autosomal-dominant medullary cystic kidney disease type 1 (MCKD1) [OMIM 174000] is a hereditary nephropathy that leads to renal salt wasting and end-stage renal failure at a median age of 62 years. In a Welsh MCKD1 kindred we have recently demonstrated linkage to the MCKD1 locus on chromosome 1q23.1 and refined the critical MCKD1 region to <3.3 Mb. METHODS: In order to refine the candidate gene region for MCKD1, high-resolution haplotype analysis in three large kindreds with MCKD1 was performed. RESULTS: We report here on high-resolution haplotype analysis in this Welsh kindred, as well as in the Arizona kindred, which was used for the first definition of MCKD as a disease entity, and in a kindred from the Dutch/German border. We detected extensive haplotype sharing among all affected individuals of all three kindreds. Scrutinization of the genealogy of the Arizona kindred revealed an origin from Germany in the 17th century, thereby providing historical data for haplotype sharing by descent at the MCKD1 locus. CONCLUSION: Under the hypothesis of haplotype sharing by descent, we refined the critical genetic interval to <650 kb, thus enabling candidate gene analysis.

Haplotypes↗
PubMedDate not supplied

Guidelines for surgical audit in Australia and New Zealand.

Surgical audit is an important part of the process to measure performance, reduce clinical risk and improve quality of care. Recognizing this, the Royal Australasian College of Surgeons established a Surgical Audit Taskforce as a subcommittee of the Board of Continuing Professional Standards. This study aims to review the recommendations of the Taskforce for data collection and peer review. The minimum data for whole-practice, continuing audit have been defined. The method of data collection, devices and databases are personal choices for the individual surgeon. However, there are many benefits of developing an electronic surgical audit, and these include facilitating comparison and sharing of audit data between units. Surgical audits should not only report on work carried out but also ensure that outcomes include key performance indicators such as major complications, readmissions, reoperations, transfers, incident reports, complaints and mortalities. Effective clinical governance demands that issues raised by audit need to be documented and reported together with recommendations for improvement. Surgeons should be proactive in helping to find and implement solutions to the issues arising from surgical audit.

Australia↗
PubMed1998

Nursing Outcomes Classification: implications for nursing information systems and the computer-based patient record.

Quality improvement, measurement, and accountability pervade all health care, including the agendas of nursing, other care providers, and consumer groups. One new face of quality is unequivocal: data will be more equitably shared among all groups for data-based quality judgments. This will emphasize quality more than cost with greater involvement of the citizens compared to health care providers, payers, and health care product suppliers. Emphasis on quality will allow patients to have a voice heard and amplified through the implementation of patient-centered outcomes in the computerized patient care record. This article describes the implications of the Nursing Outcomes Classification (NOC) for nursing information systems and the computer-based patient record.

Databases, Factual↗
PubMed1998

Quality of life 6 months after heart transplantation compared with indicators of illness severity before transplantation.

BACKGROUND: Quality of life is an important healthcare outcome to study. Quality of life after heart transplantation has not been compared with indicators of severity of illness before heart transplantation. OBJECTIVE: To compare differences in quality of life 6 months after heart transplantation with two preoperative indicators of severity of illness: New York Heart Association classification and United Network for Organ Sharing status. METHODS: Data were collected from a nonrandom sample of 219 adult patients who had received a heart transplant 6 months earlier. Patients were divided into groups on the basis of their New York Heart Association classification and United Network for Organ Sharing status immediately before transplantation. Instruments used were the Heart Transplant Symptom Checklist, Heart Transplant Stressor Scale, Rating Question Form, Quality of Life Index, Sickness Impact Profile, and Jalowiec Coping Scale. Data were analyzed with descriptive statistics, chi-square tests, and independent t tests. RESULTS: Quality of life 6 months after receiving a heart transplant varied with severity of illness before transplantation. These differences in quality of life were in the following domains: physical and occupational function, psychological state, and social interaction. Six months after receiving a heart transplant, patients who were more severely ill before transplantation were less satisfied with their lives, perceived that they were not doing as well, experienced more family-related stress, and used more negative coping strategies than did patients who were less severely ill preoperatively. CONCLUSIONS: These findings indicate the need for further study of quality of life in the transplant recipients who are the most critically ill in intensive care settings before surgery, to develop interventions to improve recipients' quality of life, and to evaluate effectiveness of those interventions longitudinally.

Adaptation, Physiological↗
PubMed2006

The Stanford Microarray Database: a user's guide.

The Stanford Microarray Database (SMD) is a DNA microarray research database that provides a large amount of data for public use. This chapter describes the use of the primary tools for searching, browsing, retrieving, and analyzing data available for SMD. With this introduction, researchers and students will be able to examine and analyze a large body of gene expression and other experiments. Additional tools for depositing, annotating, sharing, and analyzing data, available only to registered users, are also described. SMD is available for installation as a local database.

Cluster Analysis↗
PubMed2026

The ASH HematOmics Program supports integrative analysis of genomic and clinical data in hematologic diseases.

The increasing availability of genomic and transcriptomic sequencing has uncovered diverse genomic alterations and distinct gene expression profiles driving hematologic diseases, yet a data integration and sharing platform dedicated to hematology remains lacking. We developed the American Society of Hematology (ASH) HematOmics Program (ASHOP; ashop.hematology.org), a resource for exploring somatic alterations and gene fusions, transcriptomic results, and clinical data from 5960 patients spanning B-cell precursor and T-cell acute lymphoblastic leukemia, acute myeloid leukemia, myelodysplastic syndromes, and chronic lymphocytic leukemia. Users can explore genomic alteration landscapes and comutation patterns via lollipop and matrix plots and analyze significantly altered genes in user-defined subcohorts. Transcriptomes can be explored through interactive uniform manifold approximation and projections, clustering, differential expression, and pathway enrichment. Genomic, transcriptomic features, and clinical outcomes can be correlated in a user-driven manner or combined to precisely define study cohorts. We illustrate the following 4 use cases of ASHOP: (1) stratification of DUX4-rearranged B-cell leukemias into Early/Multipotent and Committed subgroups with distinct outcomes, (2) characterization of HOXA/HOXB expression patterns in acute myeloid leukemias, (3) correlating mutational burden with mismatch repair deficiency and mutational signatures, and (4) investigation of TP53 alteration landscape. ASHOP is an open-access resource to inform genomic and transcriptomic data interpretation for hematologic malignancies and will expand to support additional diseases and data modalities from the ASH community.

Humans↗
PubMed1999

Contribution of the MHC region to the familial risk of coeliac disease.

Susceptibility to coeliac disease is genetically determined by possession of specific HLA-DQ alleles, acting in concert with one or more non-HLA linked genes. The pattern of risk seen in sibs and twins in coeliac disease is most parsimonious with a multiplicative model for the interaction between the two classes of genes. Based on a sib recurrence risk for coeliac disease of 10% and a population prevalence of 0.0033, the sib relative risk is 30. To evaluate the contribution of the MHC region to the familial risk of coeliac disease, we have examined haplotype sharing probabilities across this region in 55 coeliac disease families. Based on these probabilities the sib relative risk of coeliac disease associated with the MHC region is 3.7. Combining these results with published data on allele sharing at HLA, the estimated sib relative risk associated with the MHC region is 3.3. Therefore, the MHC genes contribute no more than 40% of the sib familial risk of coeliac disease and the non-HLA linked gene (or genes) are likely to be the stronger determinant of coeliac disease susceptibility.

Celiac Disease↗
PubMed2026

CanVar-UK: A collaborative platform for germline interpretation in cancer susceptibility genes.

Germline variants in cancer susceptibility genes (CSGs) are typically inherited rather than arising de novo. Hence, wide cascade testing of families across geographies is common, meaning consistency in variant classification is particularly critical. Variant interpretation requires collation of variant-level data from diverse sources, as well as assembly of comprehensive clinical data, often necessitating sharing of information between genomic testing centers. Here, we describe CanVar-UK, a freely accessible web platform bespoke designed to support interpretation of germline CSG variants. CanVar-UK contains variant-level data for over 1.1 million single-nucleotide variants (SNVs), comprising all possible coding SNVs in 116 established CSGs. The data sources with which variants are annotated include in silico scores from 11 clinically relevant tools, population allele frequencies from gnomAD v4.1, case counts from multiple cohorts, including National Health Service (NHS) clinical laboratory testing, variant-level readouts from 47 selected functional and splicing datasets across 19 CSGs, genetic epidemiology studies, and live linkage to existing consensus classifications in the ClinVar database. The diagnostic discussion forum is only available to registered diagnostic scientist users. Through this, a variant-tagged email message can be dispatched in real time across the diagnostic forum community of >1,500 users, with all exchanges and classifications captured and stored in the platform. Already widely used by NHS diagnostic clinical scientists in the UK, CanVar-UK has a rapidly growing international diagnostic user base (>800 UK and >600 non-UK registered users). Survey of the NHS diagnostic user community illustrates the wide-ranging utility of CanVar-UK within their clinical workflows for interpretation of germline CSG variants.

Journal Article↗
PubMed2000

Restricted and shared patterns of TCR beta-chain gene expression in silicone breast implant capsules and remote sites of tissue inflammation.

Silicone breast implants (SBI) induce formation of a periprosthetic, often inflammatory, fibrovascular neo-tissue called a capsule. Histopathology of explanted capsules varies from densely fibrotic, acellular specimens to those showing intense inflammation with activated macrophages, multinucleated giant cells, and lymphocytic infiltrates. It has been proposed that capsule-infiltrating lymphocytes comprise a secondary, bystander component of an otherwise benign foreign body response in women with SBIs. In symptomatic women with SBIs, however, the relationship of capsular inflammation to inflammation in other remote tissues remains unclear. In the present study, we utilized a combination of TCR beta-chain CDR3 spectratyping and DNA sequence analysis to assess the clonal heterogeneity of T cells infiltrating SBI capsules and remote, inflammatory tissues. TCR CDR3 fragment analysis of 22 distinct beta variable (BV) gene families revealed heterogeneous patterns of T cell infiltration in patients' capsules. In some cases, however, TCR BV transcripts exhibiting restricted clonality with shared CDR3 lengths were detected in left and right SBI capsules and other inflammatory tissues. DNA sequence analysis of shared, size-restricted CDR3 fragments confirmed that certain TCR BV transcripts isolated from left and right SBI capsules and multiple, extracapsular tissues had identical amino acid sequences within the CDR3 antigen binding domain. These data suggest that shared, antigen-driven T cell responses may contribute to chronic inflammation in SBI capsules as well as systemic sites of tissue injury.

Adult↗
PubMedDate not supplied

The inefficiencies of present systems for physician credentialing.

The requirements of physicians credentialing have become standardized through the broad acceptance of the credentialing standards developed by the major accrediting bodies. However, attempts to share credentials documentation and data have been few, resulting in much redundancy among credentialing programs and excessive application paperwork for physicians. This article describes recent initiatives in the standardization of application forms and office site reviews and in the sharing of physician data. Also discussed are questions that have been raised in recent years about the value of some information that has traditionally been considered in physician credentialing.

Credentialing↗
PubMed2006

Addiction treatment agencies' use of data: a qualitative assessment.

Addiction treatment agencies typically do not prioritize data collection, management, and analysis, and these agencies may have barriers to integrating data in agency quality improvement. This article describes qualitative findings from an intervention designed to teach 23 addiction treatment agencies how to make data-driven decisions to improve client access to and retention in care. Agencies demonstrated success adopting process improvement and data-driven strategies to make improvements in care. Barriers to adding a process improvement and data-driven focus to care included a lack of a data-based decision making culture, lack of expertise and other resources, treatment system complexity, and resistance. Factors related to the successful adoption of process-focused data include agency leadership valuing data and providing resources, staff training on data collection and use, sharing of change results, and success in making data-driven decisions.

Behavior, Addictive↗
PubMed2004

[Encryption technique for linkable anonymizing].

Linkage of different records such as health insurance claims or medical records for the purpose of cohort studies or cancer registration usually requires matching with personal names and other personally identifiable data. The present study was conducted to examine the possibility of performing such privacy-sensitive procedures in a "linkable anonymizing" manner using encryption. While bidirectional communication entails encryption and deciphering, necessitating both senders and receivers sharing a common secret "key", record linkage entails only encryption and not deciphering because researchers do not need to know the identity of the linked person. This unidirectional nature relieves researchers from the historical problem of "key sharing" and enables data holders such as municipal governments and insurers to encrypt personal names in a relatively easy manner. The author demonstrates an encryption technique using readily available spread-sheet software, Microsoft Excel in a step-by-step fashion. Encoding Chinese characters into the numeric JIS codes and replacing the codes with a randomly assigned case-sensitive alphabet, all names of Japanese nationals will be encrypted into gibberish strings of alphabet, which can not be deciphered without the secret key. Data holders are able to release personal data without sacrificing privacy, even when accidental leakage occurs and researchers are still able to link records of the same name because encrypted texts, although gibberish, are unique to each name. Such a technical assurance of privacy protection is expected to satisfy the Privacy Protection Act or the Ethical Guidelines for Epidemiological Research and enhance public health research. Traditional encryption techniques, however, cannot be applied to cancer or stroke registration, because the registrar receives reports from numerous unspecified senders. The new public key encryption technique will enable disease registry in a linkable anonymizing manner. However various technical problems such as complexity, difficulties in registrar inquiries and risk of code-breaking make the encryption technique unsuitable for disease registry in the foreseeable future.

Computer Security↗
PubMed1994

Measuring gain-sharing dividends in acute care hospitals.

Hospitals have responded to industry consolidation by increasing productivity with nonmanagement, group-incentive compensation, known as gain sharing. A nationwide study conducted to obtain quantitative performance data for gain-sharing programs revealed that they are most successful during the initial stages of the program. Many variables affect the size of employee bonuses and the duration of employee support. Employers must identify how to appropriately install their gain-sharing program so that employee motivation, participation, and trust in management are maximized.

Acute Disease↗
PubMedDate not supplied

HLA frequency, HLA sharing and immunotherapy in the management of recurrent miscarriage.

OBJECTIVE: To test couples with three or more consecutive recurrent miscarriages for suitability of the mother for immunization with paternal lymphocytes. SETTING: Regional transfusion centre, patients referred by local obstetricians. PATIENTS AND INTERVENTIONS: Women treated were from 103 couples with > or = 3 consecutive recurrent miscarriages and no more than one live birth. HLA sharing and frequencies were investigated, and contrasted with control data. Patients showed increased sharing versus control (but not in comparison with gene frequencies of the county population). Sixty-eight mothers were finally found suitable and immunized with paternal lymphocytes. OUTCOME MEASURES: Pregnancy and live births. RESULTS: 55/68 conceived, with 30 live births resulting; 8/13 additional successes after repeat (booster) immunization. CONCLUSIONS: This treatment still suffers from the lack of clear criteria for patient selection, and it should be submitted to a prospective controlled double-blind trial.

ABO Blood-Group System↗
PubMed2004

PEDRo: a database for storing, searching and disseminating experimental proteomics data.

BACKGROUND: Proteomics is rapidly evolving into a high-throughput technology, in which substantial and systematic studies are conducted on samples from a wide range of physiological, developmental, or pathological conditions. Reference maps from 2D gels are widely circulated. However, there is, as yet, no formally accepted standard representation to support the sharing of proteomics data, and little systematic dissemination of comprehensive proteomic data sets. RESULTS: This paper describes the design, implementation and use of a Proteome Experimental Data Repository (PEDRo), which makes comprehensive proteomics data sets available for browsing, searching and downloading. It is also serves to extend the debate on the level of detail at which proteomics data should be captured, the sorts of facilities that should be provided by proteome data management systems, and the techniques by which such facilities can be made available. CONCLUSIONS: The PEDRo database provides access to a collection of comprehensive descriptions of experimental data sets in proteomics. Not only are these data sets interesting in and of themselves, they also provide a useful early validation of the PEDRo data model, which has served as a starting point for the ongoing standardisation activity through the Proteome Standards Initiative of the Human Proteome Organisation.

Animals↗
PubMed1999

ORCA: the versatile CPR.

The introduction of computer-based patient records (CPRs) that fully replace paper records proves especially difficult in specialized care, despite the potential advantages of CPRs for patient care and research. Improved data legibility, availability, sharing of records, and decision support may directly benefit patient care. Barriers to the introduction of CPR applications at institutions may be caused by lack of infrastructure, or by financial or organizational issues. To have clinicians interactively enter data at the point of care is still a big challenge. This paper presents an overview of ORCA (Open Record of CAre): a generic CPR, designed for integration with existing systems, presentation of multi-media patient data, and the collection of structured data, directly by clinicians. ORCA can easily be tailored to the needs of a variety of medical specialists without the need for changes to its data model, functionality, or interface. The paper describes the essence of the architecture of ORCA and the user benefits with emphasis on the support of structured data entry.

Medical Records Systems, Computerized↗