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 109 records · Page 6Linked to original sources
PubMed2005

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↗
PubMed1984

Shared hospital services: study report.

The study of shared hospital services reported in this article was conducted to determine the magnitude of shared administrative and clinical programs, what institutions participate, and most frequently shared services. To ensure that hospitals with different characteristics and in various areas were represented, the investigators mailed questionnaires to 1,731 of the nation's 5,987 short-term, acute care general hospitals in nine census regions. Responses indicated the following trends: Not-for-profit hospitals outrank other types of hospitals in using shared services. About 90 percent of hospitals with 200 to 499 beds shared services. For almost all categories of services, a percentage increase occurred in the number of hospitals participating in shared programs. The three most shared services were purchasing, data processing, and insurance programs. Hospitals shared more administrative than clinical services. According to administrators' responses, cost containment was the most common reason for sharing services. As the pressures to control health care costs increase, the investigators predict that hospitals will share more clinical services. Shared services decrease unit cost, however, only when providers have an excess capacity.

Data Collection↗
PubMed1986

When interpretation masquerades as explanation.

The principal goal of the clinical interpretation (and of the larger clinical narrative) is to bring about insight and change in the patient, and not to present a reasoned argument that relies on public data and shared rules of evidence and logic. When the clinical account is transposed to the public domain and presented as a form of explanation, it is no longer designed for the benefit of one individual but must now be accessible to all. We are still under the shadow of Freud's five famous cases which are literary landmarks of exposition and persuasion. As a result, we are less sensitive to what happens when interpretations are substituted for explanations. The time has come to develop a new genre and a new mode of clinical reporting that would allow the reader to participate in the argument, allow him to evaluate the proposed links between evidence and conclusion (instead of relying on the authority of the analyst-author), and open up the clinical report to the possibilities of refutation, disconfirmation, and falsification.

Austria↗
PubMed1997

[Codes and names of clinical laboratory tests and shared interlaboratory databases].

Physicians need to combine and compare laboratory data for one patient results from many laboratories and hospital officers and policy makers also need to merge them form the view point of public health. As there are many different codes used by different sources for the same test, it is impossible to transmit results using electronic massage standards. This problem would not exist if all laboratories used the same universal set of test identifiers. Public use sets of codes and names of clinical laboratory tests are available. We have to select and use them properly. We proposed a project to have a systematizing guideline for laboratory systems not for rationalization of laboratory works but for sharing database to assess appropriate laboratory use.

Clinical Laboratory Information Systems↗
PubMed1995

Ramipril. An updated review of its therapeutic use in essential hypertension and heart failure.

Ramipril is a second generation angiotensin converting enzyme (ACE) inhibitor. Like enalapril, it is a prodrug and is hydrolysed in vivo to release the active metabolite, ramiprilat, which has a long elimination half-life, permitting once-daily administration. The antihypertensive efficacy of ramipril has been confirmed in large-scale noncomparative studies conducted in general practice as well as in more rigorously controlled clinical trials. In the former, approximately 85% of patients with mild to moderate essential hypertension have responded successfully to treatment with ramipril 2.5 or 5 mg/day, while comparative trials indicate that the antihypertensive efficacy of the drug is equivalent to that of other established ACE inhibitors and the beta-adrenoceptor antagonist atenolol. As expected, the response rate to ramipril monotherapy is lower in patients with severe hypertension (around 40%), although the blood pressure lowering effect can be enhanced with the addition of a diuretic such as hydrochlorothiazide or piretanide. The antihypertensive efficacy of ramipril is maintained in patients with diabetes mellitus and preliminary data indicate that the drug has the beneficial effect of decreasing urinary albumin excretion in diabetic patients with nephropathy. Ramipril is superior to atenolol in causing regression of left ventricular hypertrophy, although the clinical significance of this effect per se remains to be established. The large-scale Acute Infarction Ramipril Efficacy (AIRE) study demonstrated that ramipril 5 or 10 mg/day significantly decreased the risk of all-cause mortality by 27% in patients with clinical evidence of heart failure after acute myocardial infarction, even if transient. The beneficial effect of ramipril was apparent by 30 days of treatment and appeared to be greatest in patients with more severe ventricular damage after infarction. Ramipril is well tolerated in general practice, with 5% or fewer patients discontinuing therapy because of drug intolerance. The data available suggest that ramipril shares a similar tolerability profile to that of other established ACE inhibitors. Thus, clinical data confirm ramipril as a useful alternative ACE inhibitor for the treatment of patients with mild to moderate hypertension, and indicate a beneficial effect of the drug in patients with clinical evidence of heart failure after acute myocardial infarction. It is also reasonable to assume that ramipril will be of value in the treatment of patients with more established heart failure or asymptomatic left ventricular dysfunction.

Aging↗
PubMedDate not supplied

Hospital data center delivers computing services via network of printers.

A group of 23 Virginia health care organizations has pooled their resources with a not-for-profit, shared-service organization that provides them with an extensive series of business and clinical data processing systems. This article is followed by a series of brief reports on other installations.

Computers↗
PubMed2000

[Neurodegenerative disease associated with a mutation of codon 279 (N279K) in exon 10 of Tau protein].

Frontotemporal dementia and Parkinsonism linked to chromosome 17 (FTDP-17) are related to pathogenic mutations of the Tau gene. One of these, located at codon 279, results in an asparagine to lysine substitution. It was detected in three unrelated families from different origins. This mutation affects splicing, allowing exon 10 to be incorporated more frequently in the Tau transcripts, causing an abnormal preponderance of three-over four-repeat isoforms in soluble tau and the presence of the four-repeat isoforms in the insoluble tau. To better understand this newly described pathology, we analysed data from the three previously reported families. The American family, described as "pallido-ponto-nigral degeneration" is a large family which has been extensively studied (13 neuropathological studies). The Japanese family was initially presented as "pallidonigroluysian degeneration with iron deposition" and recently found to be related to N279 K mutation. We reported clinical, pathological and genetic data from the French family. Clinical particularities are ocular movements alterations with vertical supranuclear palsy, extrapyramidal signs (rigidity, dyskinesia, with atypical resting and postural tremor) and progressive dementia. Partial or no L-DOPA responsiveness is noted. These features led to discuss progressive supranuclear palsy, in some cases. There is no amyotrophy, nor any sensibility to neuroleptics, both signs being observed in other FTDP-17 syndromes. Neuropathology and immunohistochemistry confirm the presence of Tau immunolabeled inclusions, affecting mainly neurons in brain stem nuclei and glial cells in supratentorial white matter. Neuronal loss, which is moderate in frontal and temporal cortex, is severe in substantia nigra and globus pallidum. It is variable in other subcortical structures. In these structures, it is associated with iron deposition. This latter may participate in the degenerative process of cells and led to death in some specific neurons. The selectivity of neuronal death in hereditary diseases, when compared to data concerning sporadic neurodegenerative diseases which share similar clinical signs and neuropathological lesions, reinforces the hypothesis of an increased vulnerability of some neuronal populations which express specific sets of tau isoforms. Neurons particularly involved in these diseases express exclusively exon 10 + tau isoforms.

Exons↗
PubMed2005

Representing the Patient's Therapeutic History in Medical Records and in Guideline Recommendations for Chronic Diseases Using a Unique Model.

Computer-interpretable guidelines (CIGs) are more likely to affect the clinician's behavior when they deliver patient-specific and just-in-time clinical advice. CIGs must take into account the data stored in the patient's electronic medical records (EMR). For chronic diseases, the outcome of past and ongoing treatments (therapeutic history) is used in the clinical guidelines. We propose a model for the conceptualization of therapeutic history, facilitating data sharing between EMRs and CIGs and the representation of therapeutic history and recommended treatments in clinical guidelines.Based on medical literature review and an existing treatment model, a core structure is first defined taking into account drug and non-drug treatment components and treatment type (e.g. bitherapy). These elements together with additional concepts obtained by analyzing a sample guideline relating to diabetes, are then organized into an object-oriented model, using UML formalism.We show how this model can be used to store the patient's therapeutic history in the EMR, together with other attributes such as treatment efficacy and tolerance. We also explain how this model can efficiently code guidelines therapeutic rules.We evaluated this model, using additional guidelines hypercholesterolemia and asthma. We found it capable for representing guideline recommendations in several domains of chronic diseases.

Chronic Disease↗
PubMedDate not supplied

Comparison of prostate specific membrane antigen, and prostate specific antigen levels in prostatic cancer patients.

PSA (prostate specific antigen) and PSMA (prostate specific membrane antigen) serum levels were determined in over 235 prostate cancer patients from 8 different United States clinical urological cancer centers. The clinical data were not known until after the serum assay results were shared with all participants to attempt to eliminate possible clinical bias. PSA values are useful in the clinical diagnosis and staging of prostate cancer patients, and generally fall to low values in response to effective treatment, e.g., surgery, hormones, radiation, chemotherapy. PSMA values are not related to clinical stage but if elevated can fall in response to effective treatments. In contrast, PSMA values can be elevated post-treatment in the presence of very low PSA levels (0.01 to 0.00). The elevated PSMA levels predicted a state of clinical progression or clinical resistance in most cases (> 70%). PSMA levels in this study were of better prognostic value than PSA.

Antigens, Neoplasm↗
PubMed2005

High-resolution array-CGH profiling of germline and tumor-specific copy number alterations on chromosome 22 in patients affected with schwannomas.

Schwannomas may develop sporadically or in association with NF2 and schwannomatosis. The fundamental aberration in schwannomas is the bi-allelic inactivation of the NF2 gene. However, clinical and molecular data suggest that these tumors share a common pathogenetic mechanism related to as yet undefined 22q-loci. Linkage studies in schwannomatosis, a condition related to NF2, have defined a candidate 22q-locus and excluded the NF2 gene as the causative germline mutation. Thus, analysis of aberrations in schwannomas may lead to the identification of putative gene(s) involved in the development of schwannoma/schwannomatosis. We profiled a series of 88 schwannomas and constitutional DNA using a tiling path chromosome 22 array. Array-CGH is a suitable method for high-resolution discrimination between germline and tumor-specific aberrations. Previously reported frequencies of 22q-associated deletions in schwannomas display large discrepancies, ranging from 30% to 80%. We detected heterozygous deletions in 53% of schwannomas and the predominant pattern was monosomy 22. In addition, three tumors displayed terminal deletions and four harbored overlapping interstitial deletions of various sizes encompassing the NF2 gene. When profiling constitutional DNA, we identified eight loci that were affected by copy number variation (CNV). Some of the identified CNVs may not be phenotypically neutral and the possible role of these CNVs in the pathogenesis of schwannomas should be studied further. We observed a correlation between the breakpoint position, present in tumor and/or constitutional DNA and the location of segmental duplications. This association implicates these unstable regions in rearrangements occurring both in meiosis and mitosis.

Chromosomes, Human, Pair 22↗
PubMed2006

The model for end-stage liver disease score is useful for predicting economic outcomes in adult cases of living donor liver transplantation.

BACKGROUND: The model for end-stage liver disease (MELD) is useful for assessing the recipients of liver transplants, namely, deceased-donor transplantation. The application of MELD for living donor liver transplantation (LDLT) is under investigation. Thus, the aim of this study was to analyze the impact of the MELD score in LDLT in Japan. METHODS: Seventeen adult cases of LDLT during 2001 to 2005 were enrolled. Indications for LDLT were primary biliary cirrhosis, seven; liver cirrhosis, two; hepatocellular carcinoma (HCC), three; metabolic liver disease, one; primary sclerosing cholangitis, two; Caroli's disease, one; and biliary atresia, one. Total medical charges during the operative periods were retrospectively evaluated. The united network of organ sharing (UNOS) modified was obtained using preoperative clinical data. RESULTS: The average medical expense of the 17 cases was approximately 97,901 US dollar. The UNOS-modified MELD score was 22.1. A statistically significant positive correlation was found between the MELD score and medical expense (P = 0.0086, rho = 0.657), and between the MELD score and the length of stay in the intensive care unit (ICU) (P = 0.0396, rho = 0.515). The cause of the liver disease leading to transplantation was not related to MELD score, medical expense, or length of ICU stay. CONCLUSIONS: Although not originally designed for the application to LDLT, the MELD score is useful for predicting medical expenses in LDLT. Similar to those of deceased-donor liver transplantation, the disadvantage of high medical expenses associated with a high MELD score allow consideration of an earlier elective operation in suitable cases.

Adult↗
PubMed1998

Undifferentiated arthritis and reactive arthritis.

The terms undifferentiated arthritis and undifferentiated characterize arthritides that do not fit into well-known clinical disease categories (e.g., seronegative rheumatoid arthritis and reactive arthritis) and that are an early stage or forme fruste of a definite rheumatic disease, an overlap syndrome between such diseases, or an unknown, etiologically undefined disease that remains to be differentiated from other types of arthritis or spondylarthritis. Undifferentiated arthritis and undifferentiated spondylarthritis share some clinical features with reactive arthritides. Recent data suggest that, at least in Chlamydia-induced reactive arthritis, the triggering bacteria persist in affected joints for some time during the course of the disease in a viable but nonreplicative state, providing an antigenic stimulus for a bacteria-specific immune reaction in the joint. The clinical manifestations of reactive arthritis include not only Reiter's syndrome or clinically suspected postinfectious arthritis but also undifferentiated oligoarthritis and spondylarthritis. The optimal treatment remains to be defined, but there is increasing data that antibiotic therapy is not as effective in cases of well-established reactive arthritis as has been suggested.

Arthritis↗
PubMed1991

Quantitative electroencephalography: a report on the present state of computerized EEG techniques. American Psychiatric Association Task Force on Quantitative Electrophysiological Assessment.

The American Psychiatric Association established the Task Force on Quantitative Electrophysiological Assessment in May 1989 to consider several questions of interest to psychiatrists. From the inception of techniques for quantitative electroencephalography (qEEG), the possibility was raised that it would substantially assist in the diagnosis of brain disorders. However, controversy exists over the scientific basis for such approaches and the training necessary for interpretation of computerized records. The task force's charge was to report 1) the present state of scientific knowledge about qEEG, 2) the role of qEEG in clinical psychiatric practice at the present time, 3) the training necessary for the use of qEEG techniques, and 4) the possible future of the technique in the study of mental disorders. The task force concluded that qEEG is particularly useful for the detection of abnormalities in slow waves, which are a feature of delirium, dementia, intoxication, and other syndromes involving gross CNS dysfunction. The ability of qEEG to help in the diagnosis of other disorders, such as schizophrenia or depression, is not yet established. Clinical replications and sharing of normative and patient data bases are necessary for the advancement of this field. Proper use of this technique requires extensive training in a center experienced in its use. Standards for training and for using the technology in psychiatry are urgently needed. This report was approved by the Board of Trustees in December 1990.

Brain Diseases↗
PubMed2006

Understanding the moral distress of nurses witnessing medically futile care.

PURPOSE/OBJECTIVES: To explore the topic of moral distress in nurses related to witnessing futile care. DATA SOURCES: Literature related to moral distress and futility; analysis of narratives written by 108 nurses attending one of two national continuing education courses on end-of-life care regarding their experiences in the area. DATA SYNTHESIS: Nurses were invited to share a clinical situation in which they experienced moral distress related to a patient receiving care that they considered futile. Nurses described clinical situations across care settings, with the most common conflict being that aggressive care denies palliative care. Conflicts regarding code status, life support, and nutrition also were common. Patients with cancer were involved quite often, second only to geriatric patients and patients with dementia. The instances created strong emotional responses from nurses, including feeling the need for patient advocacy and that futile care was violent and cruel. Important spiritual and religious factors were cited as influencing the clinical experiences. CONCLUSIONS: Instances of futile care evoke strong emotional responses from nurses, and nurses require support in dealing with their distress. IMPLICATIONS FOR NURSING: The ethical dilemma of futile care is complex. Additional research and support are needed for patients, families, and nurses.

Humans↗
PubMed2002

Consumer Health Informatics--integrating patients, providers, and professionals online.

Consumer Health Informatics (CHI) means different things to patients, health professionals, and health care systems. A broader perspective on this new and rapidly developing field will enable us to understand and better apply its advances. This article provides an overview of CHI discussing its evolution and driving forces, along with advanced applications such as Personal Health Records, Internet transmission of personal health data, clinical e-mail, online pharmacies, and shared decision-making tools. Consumer Health Informatics will become integrated with medical care, electronic medical records, and patient education to impact the whole process and business of health care.

Access to Information↗
PubMedDate not supplied

[Simultaneous radiochemotherapy in rectal tumors].

After about 30 years from the first trials on concurrent chemoradiation in the treatment of rectal carcinoma, a large experience in this field has been shared, both in terms of laboratory and clinical data. The possibility of concurrent chemoradiation to improve the clinical outcome and sphincter preservation in low rectal tumors has been extensively demonstrated. Great attention should be paid to the quality of radiation treatment and drug administration, to minimize the risk of therapy-related toxicity. The impact of preoperative chemoradiation on tumor control will be further clarified by the ongoing randomized studies, in terms of comparison with radiation therapy alone (EORTC study), "Total mesorectal excision" (Duch Study), postoperative chemoradiation (German CAO/ARO/AIO 94) and the potential role of adjuvant chemotherapy (EORTC and Italian study). A series of phase II studies will probably clarify the role of unconventional fractionation modalities (hyperfractionation, accelerated treatments) and of new concomitant chemotherapy (new drugs, chronomodulation) in terms of organ and sphincter preservation. A close cooperation between radiation oncologists, medical oncologists and surgeons is required.

Combined Modality Therapy↗
PubMed2003

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↗
PubMed2005

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↗