Search PubMed⌕ Search

SEARCH · Search PubMed

Results for “clinical data sharing”

Search indexed PubMed citations on genomics, clinical trials, systematic reviews and public health. Explore titles, authors and supplied subject terms, then open the PubMed record.

Quote a phrase for an exact phrase match. Source license links do not imply unrestricted reuse.

At least 127 records · Page 7Linked to original sources

Archetypes and the EHR.

The health information systems of today lack many of the desirable characteristics for clinical care or cost-effective data management which are required for shared care in an ever-changing domain. One of the most important aspects of the clinical information environment is knowledge, as distinct from information. This paper describes how small constraint models of domain concepts, known as archetypes, can be added to the knowledge environment, significantly improving interoperability, software economics and quality of care.

Cost-Benefit Analysis↗

Health care IT collaboration in Massachusetts: the experience of creating regional connectivity.

The state of Massachusetts has significant early experience in planning for and implementing interoperability networks for exchange of clinical and financial data. Members of our evolving data-sharing organizations gained valuable experience that is of potential benefit to others regarding the governance, policies, and technologies underpinning regional health information organizations. We describe the history, roles, and evolution of organizations and their plans for and success with pilot projects.

Clinical Pharmacy Information Systems↗

Application of a combined protocol for rational request and utilization of antibody assays improves clinical diagnostic efficacy in autoimmune rheumatic disease.

CONTEXT: Because of a marked increase in the number of requests for antinuclear antibodies, anti-extractable nuclear antigen antibodies, and anti-double-stranded DNA antibodies for the diagnosis of autoimmune rheumatic disease, guidelines have been proposed for their appropriate use. OBJECTIVE: To evaluate in terms of clinical efficacy and cost-benefit ratio the outcome of applying a protocol for the diagnosis of autoimmune rheumatic disease. DESIGN: A diagnostic protocol for the rational utilization of second-level tests (anti-extractable nuclear antigen antibodies and anti-double-stranded DNA antibodies) was applied at Hospital Polyclinic beginning January 2004. The appropriateness of 685 consecutive requests received at the clinical pathology laboratory from January to June 2004 was assessed. Patients who underwent these laboratory tests were followed up for 12 months after blood sample drawing. RESULTS: Introduction of the protocol led to a significant reduction in the number of second-level tests prescribed (27.9% vs 49.5% for anti-extractable nuclear antigen antibodies; 27.5% vs 56.6% for anti-double-stranded DNA antibodies). After the period of observation, none of the 163 patients who had negative results on the first-level test and were asymptomatic, for whom second-level tests had not therefore been performed, were found to have autoimmune rheumatic disease. In 90.5% (77/85) of patients positive for the second-level tests, clinical confirmation of autoimmune rheumatic disease was obtained. CONCLUSIONS: Not only did application of the diagnostic protocol reduce the number of second-level tests performed but it also increased their specificity. Our data thus indicate that the use of shared guidelines by clinical and laboratory specialists yields satisfactory results.

Antibodies, Anti-Idiotypic↗

Design aspects of a distributed clinical trials information system.

BACKGROUND: Clinical trials informatics has evolved through the development of multiple applications addressing distinct parts of the clinical trials cycle. This setting creates difficulties in the transport and sharing of data among applications that serve a common functionality. PURPOSE: We present an alternative approach for the design of clinical trials information systems consisting of loosely coupled components standing on a comprehensive model of the global clinical trial process. METHODS: We describe how such a structure is able to support the development and implementation of complex knowledge-driven modules, such as automated database query systems, reporting systems and intelligent data-analysis tools, and how currently available internet technologies may be used to support the independent development of applications and collaboration between researchers. RESULTS: These principles were applied to the development of a fully functional system that has been in production for eight years in a diversity of pharmaceutical and academic drug trials. Marked time savings in database set-up and statistical reporting have been documented, as well as good reliability in the selection of appropriate statistical methods to clinical trial data analysis. CONCLUSIONS: In order to meet the expected functionality and to avoid the proliferation of databases and software applications, clinical trials information systems need to be based on a generic model of clinical trials and on a distributed architecture.

Clinical Trials as Topic↗

Leadership: The RN clinical leader: one hospital's experience.

Hartford Hospital in Hartford, Connecticut made some important changes in redesigning its patient care delivery system with the development of a new role: the RN clinical leader. This role provides for RN accountabilities, such as mentoring, data management, evidence-based practice, and shared governance. This article describes the RN clinical leader and the education provided to nurses who assume this role. An evaluation process is underway to capture the impact of this new nursing role. The RN clinical leader is not part of a career ladder in the typical sense. It does, however, recognize nurses who possess additional competencies and want to take on greater responsibility to provide leadership while retaining their role at the bedside. Those competencies are obtained through a formal educational program with immediate application in the hospital itself.

Career Mobility↗

Shortened lengths of stay: ensuring continuity of care for mothers and babies.

Hospital discharge on the day after an uncomplicated vaginal delivery may be appropriate if clinical criteria are used for the selection of patients and post-discharge follow-up plans are in place. To ensure safety for these patients, Advocate Health Care developed a mother/baby philosophy statement, guidelines for maternal and infant discharge in less than 48 hours, and an algorithm to assure that appropriate follow-up care takes place after discharge. To evaluate the Mother/Baby Home Transition Program, home health follow up, readmission rates, and sentinel events were tracked. Most home health visits occurred within 48 hours. Infant readmission rates ranged from 1.1-2.6%, whereas maternal readmission rates ranged from 0-0.52%. Three sentinel events in 1996 and three in 1997 required readmissions to an ICU. Data continue to be monitored and shared monthly with clinical leaders.

Adult↗

EMR to the rescue. An ambulatory care pilot project shows that data sharing equals cost shaving.

PROBLEM: Inefficiencies in managing office practices and costs. SOLUTION: Installation of an EMR in ambulatory practices to integrate clinical data from patient visits and use it to improve efficiencies "downstream". RESULTS: Marked reduction in costs of ambulatory practice management and major improvements in revenue capture, improved patient satisfaction. KEYS TO SUCCESS: Analysis of workflow, documentation of progress with benchmarking.

Academic Medical Centers↗

Nursing constraint models for electronic health records: a vision for domain knowledge governance.

Various forms of electronic health records (EHRs) are currently being introduced in several countries. Nurses are primary stakeholders and need to ensure that their information and knowledge needs are being met by such systems information sharing between health care providers to enable them to improve the quality and efficiency of health care service delivery for all subjects of care. The latest international EHR standards have adopted the openEHR approach of two-level modelling. The first level is a stable information model determining structure, while the second level consists of constraint models or 'archetypes' that reflect the specifications or clinician rules for how clinical information needs to be represented to enable unambiguous data sharing. The current state of play in terms of international health informatics standards development activities is providing the nursing profession with a unique opportunity and challenge. Much work has been undertaken internationally in the area of nursing terminologies and evidence-based practice. This paper argues that to make the most of these emerging technologies and EHRs we must now concentrate on developing a process to identify, document, implement, manage and govern our nursing domain knowledge as well as contribute to the development of relevant international standards. It is argued that one comprehensive nursing terminology, such as the ICNP or SNOMED CT is simply too complex and too difficult to maintain. As the openEHR archetype approach does not rely heavily on big standardised terminologies, it offers more flexibility during standardisation of clinical concepts and it ensures open, future-proof electronic health records. We conclude that it is highly desirable for the nursing profession to adopt this openEHR approach as a means of documenting and governing the nursing profession's domain knowledge. It is essential for the nursing profession to develop its domain knowledge constraint models (archetypes) collaboratively in an international context.

Artificial Intelligence↗

Megakaryocytic and erythrocytic cell lines share a common precursor cell.

Several recent studies show that production of platelets and red blood cells (RBC) are inversely related. For example, it is well established that hypoxia, a stimulator of erythropoiesis, causes thrombocytopenia in laboratory animals. The thrombocytopenia is most likely the result of a reduction in the production of platelets caused by a decrease in the number of colony-forming units-megakaryocyte (CFU-Meg), early precursor megakaryocytes (small acetylcholinesterase-positive cells, SAChE+), and recognizable megakaryocytes in the bone marrow. In all cases, active erythropoiesis was required for the thrombocytopenia. The hypoxia-induced thrombocytopenia was not caused by sequestration of platelets in an enlarged spleen or by expanding blood volumes. We speculate that this thrombocytopenia is caused by competition of a precursor cell of the erythrocytic and megakaryocytic cell lines; that is, marked stimulation of the erythroid cells by erythropoietin (Epo) causes a decrease in the number of immature megakaryocytes, leading to decreased thrombocytopoiesis. In support of this hypothesis, other recent work shows that thyroxine (a stimulator of erythropoiesis) and Epo (when given in large, chronic doses) elevate erythropoiesis and cause thrombocytopenia. Conversely, both endogenous and exogenous sources of thrombopoietin lead to elevated thrombocytopoiesis and anemia in mice. It should also be mentioned that megakaryocytes and erythrocytes have several biochemical similarities, and several clinical conditions point to an inverse relationship between RBC and platelet production. These in vivo, biochemical, and clinical data support the hypothesis that megakaryocytes and erythrocytes share a common precursor cell.

Animals↗

Integrating worldwide marketing needs and clinical research.

In this era of globalization, expanding research needs, and the necessity of sharing global technologies and worldwide data evaluation techniques, a challenging environment has been created for multinational drug development, clinical testing, and marketing. Integrating worldwide marketing needs and clinical research will become even more significant in the future as harmonization of pharmaceutical industry research and regulatory requirements increase with the unification of the European Economic Community. Marketing and research teams within a pharmaceutical company must work closely together to make the drug being developed appropriate to a global market.

Drug Industry↗

Dementia with Lewy bodies: prevalence, clinical spectrum and natural history.

The article summarises history, terminology, the clinical and neuropathological diagnostic criteria, neurochemical and genetic findings, sensitivity and specificity of the clinical diagnostic criteria, prevalence, demographical data and nosology, differential diagnosis, and therapy of dementia with Lewy bodies (DLB). DLB shares clinical symptoms of Parkinson's disease and dementia of the Alzheimer-type (DAT). However, DLB is also different to PD and DAT (less tremor and asymmetry of the motor symptoms, more falls, and less favourable response to L-Dopa than PD; in contrast to DAT marked cognitive fluctuations and phases of reduced alertness, hallucinations and delirium). There are genetic similarities to DAT and PD in terms of common genetic risk factors. A genetic cause of the disease has so far not been detected. Whether or not DLB is a disease entity or an association of diseases (Lewy body disease and DAT) has so far not been elucidated. Clinical distinction from DAT and PD has clinical importance because of different therapeutic and prognostic implications. Studies are needed to standardize the treatment of motor, cognitive, psychiatric and vegetative symptoms.

Aged↗

The teamwork project: a collaborative approach to learning to nurse families.

The purpose of this exploratory study was to gain insight into students' perceptions of learning to nurse families using a team approach. A sample of 112 third-year baccalaureate nursing students provided data from clinical journals and responses to a teacher-developed questionnaire regarding number of home visits made with a partner, the extent to which partners shared responsibility for the nursing care of two families, perceived benefits and disadvantages of teamwork, roles assumed by team members, perceived outcomes of the team approach, and suggestions for revision of the approach. The degree to which students shared responsibility was moderate and positive perceptions of teamwork were significantly correlated with the degree of sharing of nursing activities. Using Spradley's qualitative method of domain analysis, interpretation of data from students' clinical journals revealed subjective aspects of the experience that appeared to influence teamwork practices and attitudes. Results suggest that the shared assignment approach offers students a unique opportunity to learn about the realities of collaborative nursing practice.

Attitude↗

High-resolution anatomy from in situ human brain.

We have generated a spatially accurate, high-resolution three-dimensional (3D) volume of brain anatomy from cryosectioned whole human head. The head of a female cadaver was cryosectioned on a heavy duty cryomacrotome (PMV, Stockholm Sweden) modified for quantitative digital image capture. Serial images (1024(2), 24-bit) were captured directly from the cryoplaned specimen blockface in 500-micron intervals and reconstructed to a 3D data volume. Data were placed into the Talairach coordinate system to create a volume of brain anatomy for atlas reference. We resampled the volume at 500 microns along the sagittal, coronal, and horizontal planes and enhanced the images by digitally editing the background. The spatial resolution of the original digitized images provided sufficient anatomic detail to clearly delineate gray and white matter and neural structures, including major fiber pathways, subthalamic nuclei, and laminae. We developed a compact disk and controlling software program to enable the viewer to select planes of orientation, display, and copy individual to sections at higher resolution. Animation proved useful in the conveyance of system anatomy as structures are shown traversing through the neuroaxis. Postmortem cryosectioning paired with this computerized presentation allowed the complete 3D volume data to be distributed and shared as an educational, clinical, and research resource.

Aged↗

Pyogenic arthritis, pyoderma gangrenosum, and acne syndrome maps to chromosome 15q.

Pyoderma gangrenosum, cystic acne, and aseptic arthritis are clinically distinct disorders within the broad class of inflammatory diseases. Although this triad of symptoms is rarely observed in a single patient, a three-generation kindred with autosomal-dominant transmission of these three disorders has been reported as "PAPA syndrome" (MIM 604416). We report mapping of a disease locus for familial pyoderma gangrenosum-acne-arthritis to the long arm of chromosome 15 (maximum two-point LOD score, 5.83; recombination fraction [straight theta] 0 at locus D15S206). Under the assumption of complete penetrance, haplotype analysis of recombination events defined a disease interval of 10 cM, between D15S1023 and D15S979. Successful identification of a single disease locus for this syndrome suggests that these clinically distinct disorders may share a genetic etiology. These data further indicate the role of genes outside the major histocompatibility locus in inflammatory disease.

Acne Vulgaris↗

Neuroimaging PheWAS and molecular phenotyping implicate PSMC3 in Alzheimer's Disease.

INTRODUCTION: Neuroimaging genetics have advanced Alzheimer's disease (AD) research, yet frameworks mechanistically connecting genes to neurological outcomes via functional genomics are needed to elucidate genetic associations. To address this challenge, we assessed relationships between AD-associated variants and disease via their impact on gene expression and neuroimaging phenotypes. METHODS: We mapped established AD genes to neuroimaging traits using NeuroimaGene atlas and predicted transcript-driven AD neurological features by comparing gene-derived neuroimaging features to clinical neuroimaging data. Genetic correlation and covariance analyses characterized shared genetic architecture between AD endophenotypes and neuroimaging features and identified neuroimaging features associated with dementia family history. RESULTS: Our analyses implicate PSMC3 expression as a strong contributor to AD pathophysiology and indicate AD endophenotypes, including dementia family history, linked to frontal cortex thickness, volume, and cerebrospinal fluid volume changes. DISCUSSION: Our findings prioritize AD genes whose regulation is associated with vulnerable brain regions, offering a potential mechanistic framework for downstream functional validation.

Alzheimer’s Disease↗

HLA-DRB1 typing in rheumatoid arthritis: predicting response to specific treatments.

OBJECTIVE: To determine the predictive value of shared epitope alleles for response to treatment in patients with rheumatoid arthritis. METHODS: Patients from our previously published triple DMARD study were tested for the presence of shared epitope alleles (DRB1 *0401, 0404/0408, 0405, 0101, 1001, and 1402). Patients who were shared epitope positive were then compared with those who were negative to see if there was a differential effect on therapeutic response. RESULTS: Shared epitope positive patients were much more likely to achieve a 50% response if treated with methotrexate-sulphasalazine-hydroxychloroquine compared with methotrexate alone (94% responders versus 32%, p < 0.0001). In contrast shared epitope negative patients did equally well regardless of treatment (88% responders for methotrexate-sulphasalazine-hydroxychloroquine versus 83% for methotrexate). Additionally, a trend toward an inverse relation of the gene dose was seen for response to methotrexate treatment (p = 0.05). CONCLUSIONS: These data suggest that determining shared epitope status may provide clinical information useful in selecting among treatment options.

Adult↗

A new experimental rat model of osteosarcoma established by intrafemoral tumor cell inoculation, useful for biology and therapy investigations.

Satisfactory experimental models for preclinical cancer studies must follow several criteria: (1) reproducibility of the method used to induce the tumor and (2) clinical, pathological and kinetic similarity with the corresponding human tumors. We developed a model of osteosarcoma locally induced by the intrafemoral injection of osteosarcoma (OSR) cells in Sprague-Dawley rats. This method yields nearly 80% of bone tumors at the injection site. These tumors double their volume fairly slowly (in approximately 20 days) and lung metastases occur in 96% of the animals. The OSR cell-induced tumor is characterized by a direct production of mineralized matrix by the tumor cells themselves, as revealed by histochemical analysis. The microarchitectural parameters which were quantified by a microscanner show an increased trabecular bone volume (+238%) when OSR cells were injected in the femur, as compared to controls injected with vehicle. Osteoblastic markers such as alkaline phosphatase, osteopontin, osteocalcin and bone sialoprotein were expressed by the tumor in vivo, whereas the initially injected OSR cells did not express some of these markers, suggesting that OSR cells reacquired an osteoblastic phenotype in a favorable environment. The clinical, radiological and histological data show that this model shares high similarities with the osteocondensing forms of osteosarcoma in humans.

Animals↗

Clinical teaching of student nurses by unit managers of selected hospitals in Limpopo Province.

The comprehensive nature of nurse training needs the involvement of almost all health team personnel, including unit managers to gain practical experience and learn to correlate theory and practice. The overall aim of the study was to explore and describe the experiences of unit managers regarding teaching of student nurses in the clinical area and to develop recommendations that will enhance clinical teaching, for the production of competent future nurse practitioners who will render quality care to patients. A qualitative design, which is explorative, descriptive and contextual in nature, was employed, utilizing a phenomenological approach to capture the experiences of unit managers regarding teaching of student nurses at selected hospitals, where students are allocated for their clinical exposure. Ethical measures as well as measures to ensure trustworthiness were adhered to. In-depth phenomenological interviews were conducted with unit managers who shared their experiences regarding clinical teaching of student nurses. Data analysis was done according to Tesch's (1990) open coding method. One major theme emerged, namely that unit managers experienced problems when doing clinical teaching of student nurses. Based on the findings the following recommendations were made: Colleges should open a two-way communication with unit managers, involvement of unit managers in the activities that take place at the college like courses, seminars and workshops on clinical teaching, learning contracts should be developed for the students and issues of clinical learning should be addressed and unit managers should be included in both summative and formative evaluations.

Attitude↗