Search PubMed⌕ Search

SEARCH · Search PubMed

Results for “data accessibility”

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 1,369 records · Page 76Linked to original sources
PubMed2026

The European Health Data Space and the Secondary Use of Sensitive Health Data.

INTRODUCTION: The European Health Data Space (EHDS) is one of the European Union's most ambitious data-governance projects. It aims to create a common framework through which electronic health data can be accessed and reused across Member States for care, research, innovation, policy, and public-interest purposes. Its practical viability depends not only on digital infrastructure, but also on legal, ethical, and organisational harmonisation, particularly for genetic and genomic data. METHODS: This paper examines the EHDS with emphasis on the secondary use of health data. It reviews the EHDS institutional architecture, discusses Finland's Findata as a national model for structured access, and analyses challenges for data holders and data donors, including interoperability, governance burdens, privacy protection, residual re-identification risk, and genomic-data sensitivity. RESULTS: A cross-border cancer-genomics case study shows that the EHDS can streamline data discovery and the routing of access requests, but does not by itself eliminate legal fragmentation, heterogeneous ethics review, and consent-related barriers. DISCUSSION: Effective implementation will require harmonisation beyond infrastructure, including clearer consent standards, more consistent ethics procedures, interoperable metadata, and proportionate safeguards for genomic data.

Electronic Health Records↗
PubMed2004

Sex differences in the escalation of intravenous cocaine intake following long- or short-access to cocaine self-administration.

Preclinical data have indicated that extended access to cocaine self-administration (e.g., 6-12 h/day) facilitates an escalation in daily cocaine intake that is not seen when rats are given shorter (e.g., 1-2 h/day) access to cocaine for self-administration. Data from studies with rats have shown that females self-administer more cocaine than males during all phases of drug abuse (e.g., acquisition, maintenance, and reinstatement). The purpose of this study was to examine potential differences between males and females in the escalation of intravenous cocaine intake following a differential access (e.g., 1 vs. 6 h) period of cocaine self-administration. Four groups of rats were compared: (1) long-access (LgA; 6 h) females; (2) LgA males; (3) short-access (ShA; 1 h) females; and (4) ShA males. Animals were given LgA or ShA to intravenous cocaine (0.5 mg/kg/infusion) self-administration under an Fr 1 schedule for 21 days. Subsequently, access conditions were made equal (3 h) across groups, and dose-response curves for cocaine were compared. Results revealed that the LgA groups' dose-response curves were significantly elevated above those of ShA groups. Additionally, the dose-response curve of LgA female rats was significantly elevated above that of LgA male rats. These results suggest that female rats are more sensitive than male rats to factors that contribute to the escalation of cocaine intake (e.g., extended access conditions).

Animals↗
PubMed1998

[Design and preliminary results of the Erlanger non-high-risk penetrating-keratoplasty study].

PURPOSE: The purpose of this prospective study is to examine the non-high-risk penetrating keratoplasty clinically, tyndallometrically and immunological-serologically in order to learn more about the pathogenesis, early symptoms and therapy monitoring of corneal graft rejection. PATIENTS AND METHODS: Since february 1997, patients undergoing non-high-risk-PK have been enrolled in this prospective study. Examinations are done preoperatively and in well-defined postoperative gates (6 weeks, 3 months, 6 months, etc.) and include clinical assessments, corneal topography, laser-tyndallometry, corneal endothelial cell count and corneal pachymetry. Preoperatively as well as at each postoperative examination, 10 ml serum and perioperatively corneoscleral donor tissue are collected and frozen (-80 degrees C) to allow immunological and serological examinations in case of graft rejection later. A relational data base (MS Access) guarantees complete and homognous standardized clinical and serological data. We randomised our patients with respect to duration of topical steroid therapy in standard situations (short-time vs. long-time) as well as for systemic steroid therapy (bolus group vs. tapering group) in case of a graft rejection in 2 treatment groups. RESULTS: Up to March 1998, 99 patients have been enrolled in this prospective study. Our report includes the first consecutive 55 patients (25 female, 30 male, recipient age 56.9 +/- 19.4 years, donor age 57.0 +/- 19.9 years). Up to now (follow-up 2.5 +/- 2.1, maximum of 7.3 months) we did not observe immunologic graft rejections. In one patient a primary graft failure occurred. Laser tyndallometry showed a reduction of blood-aqueous barrier breakdown from 6 weeks postoperatively (9.3 +/- 5.7 photon counts/msec) to 3 months postoperatively (6.8 +/- 3.5 photon counts/msec). CONCLUSION: This prospective randomized clinical and immunological study after non-high-risk-PK is supposed to give more information about pathogenesis, early symptoms and therapy monitoring of graft rejection after elective PK. The concept and design of this study are described. Preliminary data may give significant results in a few years.

Adult↗
PubMed1999

Application of legal and regulatory rules and policies to benchmarking systems.

Although there are few federal or state laws that address benchmarking systems, there are legal issues of which those who develop or use benchmarking system should be aware. Benchmarks may be used as standards of care in tort or professional discipline actions. Use of benchmark data to set fees or exclude providers may raise antitrust concerns. Payers may use benchmark data to set coverage policies or payment rates. Which data are included in benchmarking systems and who has access to those data raise issues of confidentiality. Lastly, benchmarking system developers may want to protect their intellectual property rights and may need to consider medical device laws if they claim that the systems may be used in patient management.

Antitrust Laws↗
PubMed1984

Data storage and retrieval by implantable pacemakers for diagnostic purposes.

The functions of many of today's dual-chamber pacemakers are performed using custom microprocessors that are similar to those used in mainframe computers. The data storage and transmission capabilities of these microprocessor-controlled pacemakers can be used to record, process, and transmit information regarding the patient, pacemaker, or patient/pacemaker interaction. The limitations of such data processing systems depend upon (1) quantity and quality of incoming information, (2) software routines for data collection, and (3) the amount of available random access memory (RAM). Data obtained can be useful in patient management and follow-up, particularly in the areas of optimization of programming, monitoring of disease progression, assessment of pharmacologic therapy, and pacemaker troubleshooting. Anticipated advances in data collection capabilities will allow increasingly sophisticated analysis that will complement, and may in some cases, supplant the Holter monitor recording in evaluating some aspects of rhythm and/or pacemaker behavior in selected patients.

Adult↗
PubMed2003

Structure, functions, and activities of a research support informatics section.

The authors describe a research group that supports the needs of investigators seeking data from an electronic medical record system. Since its creation in 1972, the Regenstrief Medical Records System has captured and stored more than 350 million discrete coded observations on two million patients. This repository has become a central data source for prospective and retrospective research. It is accessed by six data analysts--working closely with the institutional review board--who provide investigators with timely and accurate data while protecting patient and provider privacy and confidentiality. From January 1, 1999, to July 31, 2002, data analysts tracked their activities involving 47,559 hours of work predominantly for physicians (54%). While data retrieval (36%) and analysis (25%) were primary activities, data analysts also actively collaborated with researchers. Primary objectives of data provided to investigators were to address disease-specific (35.4%) and drug-related (12.2%) questions, support guideline implementation (13.1%), and probe various aspects of clinical epidemiology (5.7%). Outcomes of these endeavors included 117 grants (including 300,000 US dollars per year salary support for data analysts) and 139 papers in peer-reviewed journals by investigators who rated the support provided by data analysts as extremely valuable.

Biomedical Research↗
PubMed2001

Measuring organizational performance in the hospital industry: an exploratory comparison of objective and subjective methods.

One of the major challenges facing health services management researchers is the measurement of various aspects of organizational performance. This challenge is exacerbated by a reluctance of many healthcare organizations to share data with researchers because of a fear of competitor access to these data. Even where objective, reliable and valid measures of organizational performance are available, typically they are available only in aggregate form, rather than for individual organizations. In response to these constraints, researchers have used subjective measures of performance often based on the perception of key executives. This research compares the subjective perceptions of hospital executives to the objective financial performance data of 60 hospitals. While the correlations between the subjective and objective measures vary, return of assets (ROA) and operating margin are the most valid subjective financial measures of hospital performance. Implications for future research are discussed.

Accounts Payable and Receivable↗
PubMedDate not supplied

Methodological considerations with secondary analyses.

The use of secondary data sets has begun to receive increased attention in nursing research. Shrinking grant dollars, continuing pressure to produce replicable generalizable research results, and a growing interest in outcomes management and research have all contributed to an interest in examining how data may be used for multiple purposes. Secondary data analysis may offer the practitioner and researcher ready access to large data sets with multiple variables; yet, there are potentially significant methodological concerns that should be well understood and managed in the initial query design. Considered here will be some of the issues regarding the reliability and validity of large data sets used for secondary analysis, including a discussion on maintaining the integrity of those files as they are moved, merged, and transformed. Finally, methods for managing missing data are reviewed.

Abstracting and Indexing↗
PubMedDate not supplied

[Clinical applications of positron emission tomography].

Positron emission tomography (PET) is a non invasive method of medical investigation which allows visualization and quantification of functional and metabolic data at the level of target organs. PET gives access to biological data on regional blood flow, energetic metabolism, synthesis and binding processes. In the brain, PET allows the study of different processes related to neurotransmission. PET provides data on cellular changes related to injuries, dysfunctions or abnormal proliferation. Diagnostic value of PET informations has been documented in several diseases, mainly in neurology, cardiology and oncology. The expected development of PET is related to advances in new radiotracers chemistry.

Adult↗
PubMed1997

The Danish prescription registries.

The extensive computerisation of Danish pharmacies has permitted the establishment of two large prescription registries: The Odense University Pharmacoepidemiological Database (OPED) and the Pharmacoepidemiological Prescription Database of North Jutland (PDNJ). The Danish prescription registries content, coverage, completeness and the quality of the data are discussed in this article. Furthermore, conditions for access to the data are presented. The two prescription registries cover a background population of approximately one million or 18% of the Danish population. The populations covered by the registries are stable and representative of the Danish population in general. The registries cover all reimbursed medicine at the level of the individual user. Registration of a unique and permanent personal identifier enables the compilation of longitudinal drug histories and allows the linking of prescription data to other population-based Danish registries. The degree of completeness of the Danish prescription registries is excellent for reimbursed prescription drugs. A small number of comparison studies also indicate high validity of the register information. The Danish prescription registries represent a useful new data source for pharmacoepidemiological studies.

Adverse Drug Reaction Reporting Systems↗
PubMed2004

GDPC: connecting researchers with multiple integrated data sources.

UNLABELLED: The goal of this project is to simplify access to genomic diversity and phenotype data, thereby encouraging reuse of this data. The Genomic Diversity and Phenotype Connection (GDPC) accomplishes this by retrieving data from one or more data sources and by allowing researchers to analyze integrated data in a standard format. GDPC is written in JAVA and provides (1) data sources available as web services that transfer XML formatted data via the SOAP protocol; (2) a JAVA API for programmatic access to data sources; and (3) a front-end application that allows users to manage data sources, retrieve data based on filters, sort/group data based on property values and save/open the data as XML files. AVAILABILITY: The source code, compiled code, documentation and GDPC Browser are freely available at: www.maizegenetics.net/gdpc/index.html the current release of GDPC is version 1.0, with updated releases planned for the future. Comments are welcome.

Database Management Systems↗
PubMed2025

A decentralized future for the open-science databases.

The continuous and reliable open access to curated biological data repositories is indispensable for accelerating rigorous scientific inquiry and fostering reproducible research outcomes. However, the current paradigm, which relies heavily on centralized infrastructure for the storage and distribution of foundational biomedical datasets, inherently introduces significant vulnerabilities. This centralized model is susceptible to single points of failure, including cyberattacks, technical malfunctions, natural disasters, and even political or funding uncertainties. Such disruptions can lead to widespread data unavailability, data loss, integrity compromises, and substantial delays in critical research, ultimately impeding scientific progress. The downstream effect of such interruptions can be the widespread paralysis of diverse research activities, including computational, clinical, molecular, and climate studies. This scenario vividly illustrates the inherent dangers of consolidating essential scientific resources within a single geopolitical or institutional locus. As data generation is accelerating and the global landscape continues to fluctuate, the sustainability of centralized models must be critically re-evaluated. A shift toward federated and decentralized architectures may offer a robust and forward-looking approach to enhancing the resilience of scientific data infrastructures by reducing exposure to governance instability, infrastructural fragility, and funding volatility, while also promoting equity and global accessibility. Inspired by established models such as ELIXIR's federated infrastructure and the policy and funding frameworks developed by CODATA and the Global Biodata Coalition (GBC), emerging Decentralized Science (DeSci) initiatives can contribute to building more resilient, fair, and incentive-aligned data ecosystems. The future of open science depends on integrating these complementary approaches to establish a globally distributed, economically sustainable, and institutionally robust infrastructure that safeguards scientific data as a public good, further ensuring continued accessibility, interoperability, and preservation for generations to come. Here, we examine the structural limitations of centralized repositories, evaluate federated and decentralized models, and propose a hybrid framework for resilient, fair, and sustainable scientific data stewardship.

data accessibility↗
PubMed2005

Disclosure of competing financial interests and role of sponsors in phase III cancer trials.

Financial relationships between industry, researchers and academic institutions are becoming increasingly complex, raising concern about sponsors' involvement in the conduct of biomedical research. A review of published randomised trials (RCTs) in cancer research was performed to assess adherence to the 1997 disclosure requirements and to document the nature of the disclosed interests. Source(s) of study support, author-sponsor relationships and the role of the study sponsor were assessed for all RCTs published between 1999 and 2003 in 12 international journals. A total of 655 cancer RCTs were identified. Of these, 516 (78.8%) disclosed the source of sponsorship. The nature of the relationship between the authors and the study sponsor was included in 219 of the 227 industry-sponsored studies. The most commonly cited relationships were (131 studies had multiple relations): grants (93.6%); employment (39.2%); consultant/honorarium (12.7%) and stock ownership and participation in a speaker's bureau (12, 5.5% each). Only 41 (18%) of the 227 industry-sponsored RCTs reported the role of the sponsor. Of these, 20 explicitly stated that the sponsor had no role in the study. Twenty-one papers described the sponsor's role, the degree of sponsor involvement was variable and usually described vaguely. Among these papers, four stated that researchers had full access to all data, one that the researchers had no limits on publication and one that 'the decision to submit the paper for publication was determined by the study sponsor'. In conclusion, no researcher should be expected to produce 'findings' without full access to the data, freedom from interference in analysis and interpretation and liberty to publish all results, however disappointing to the stakeholder they may be. In the meantime, researchers do well to arm themselves with the rules for research partnerships and editors to take on the role of watchdog.

Clinical Trials, Phase III as Topic↗
PubMed2005

ArrayExpress--a public repository for microarray gene expression data at the EBI.

ArrayExpress is a public repository for microarray data that supports the MIAME (Minimum Information About a Microarray Experiment) requirements and stores well-annotated raw and normalized data. As of November 2004, ArrayExpress contains data from approximately 12,000 hybridizations covering 35 species. Data can be submitted online or directly from local databases or LIMS in a standard format, and password-protected access to prepublication data is provided for reviewers and authors. The data can be retrieved by accession number or queried by various parameters such as species, author and array platform. A facility to query experiments by gene and sample properties is provided for a growing subset of curated data that is loaded in to the ArrayExpress data warehouse. Data can be visualized and analysed using Expression Profiler, the integrated data analysis tool. ArrayExpress is available at http://www.ebi.ac.uk/arrayexpress.

Animals↗
PubMed2025

Integrated genomic analysis of NF1-associated peripheral nerve sheath tumors: an updated biorepository dataset.

Neurofibromatosis type 1 (NF1) is an inherited neurocutaneous condition that predisposes to the development of peripheral nerve sheath tumors (PNST) including cutaneous neurofibromas (CNF), plexiform neurofibromas (PNF), atypical neurofibromatous neoplasms of uncertain biologic potential (ANNUBP), and malignant peripheral nerve sheath tumors (MPNST). The Johns Hopkins NF1 biospecimen repository promotes the successful advancement of therapeutic developments for NF1-associated PNST through acquisition and genomic analysis of human tumor specimens. RNA sequencing (RNAseq) and whole exome sequencing (WES) data were generated from 73 and 114 primary human tumor samples, respectively. These pre-processed data, standardized for immediate computational analysis, are accessible through the NF Data Portal, allowing immediate interrogation. This dataset combines new and previously released samples, offering a comprehensive view of the entire cohort sequenced. As a dedicated effort to systematically bank tumor samples from people with NF1, in collaboration with molecular geneticists and computational biologists, the Johns Hopkins NF1 biospecimen repository offers access to tissue samples and genomic data to promote the advancement of NF1-related tumor biologic insights and therapies.

Humans↗
PubMed2006

Radiation doses from venous access procedures.

PURPOSE: To retrospectively analyze radiation dose data for six common venous access procedures. MATERIALS AND METHODS: Institutional review board approval was obtained for this HIPAA-compliant study; informed consent was not required. Data review was limited to a quality assurance database. Patient medical records were not reviewed. We retrospectively analyzed radiation dose data from a prospective quality assurance program. Dose data were analyzed for 1010 instances of six different venous access placement procedures performed between February 1998 and July 2004. Radiation dose measurements were generated automatically by the interventional fluoroscopy units and were recorded at the conclusion of each procedure. Descriptive and summary statistical analyses were performed to determine median, minimum, and maximum values of radiation dose for each procedure. A P value of less than .05 indicated a significant difference. Because the data distribution was highly skewed, logarithmic transformation was performed. Dose data for four different venous access procedures (excluding chest port placement and peripherally inserted central catheter placement) were compared with a one-way analysis of variance. Pairwise comparisons with the Tukey honestly significant difference test were subsequently performed for each analogue where analysis of variance demonstrated a significant result. RESULTS: No procedure yielded a cumulative dose of more than 950 mGy or a peak skin dose of more than 760 mGy. The highest mean cumulative dose (ie, 88 mGy), mean dose-area product (ie, 873 cGy . cm(2)), and mean peak skin dose (ie, 43 mGy) were observed for tunneled dialysis catheter placements. Significant differences in dose were observed for tunneled catheter placement versus nontunneled catheter placement (<.001 to .027). No significant differences in dose were observed for larger-diameter versus smaller-diameter catheters. CONCLUSION: Radiation doses from venous access procedures are low. Even extreme outlier cases are unlikely to produce doses high enough to cause skin effects, especially when knowledgeable operators using well-calibrated equipment perform the procedures.

Analysis of Variance↗
PubMedDate not supplied

A multiresolution representation for massive meshes.

We present a new external memory multiresolution surface representation for massive polygonal meshes. Previous methods for building such data structures have relied on resampled surface data or employed memory intensive construction algorithms that do not scale well. Our proposed representation combines efficient access to sampled surface data with access to the original surface. The construction algorithm for the surface representation exhibits memory requirements that are insensitive to the size of the input mesh, allowing it to process meshes containing hundreds of millions of polygons. The multiresolution nature of the surface representation has allowed us to develop efficient algorithms for view-dependent rendering, approximate collision detection, and adaptive simplification of massive meshes. The empirical performance of these algorithms demonstrates that the underlying data structure is a powerful and flexible tool for operating on massive geometric data.

Algorithms↗
PubMed2007

Proteomic data exchange and storage: the need for common standards and public repositories.

The ever increasing volumes of proteomic data now being produced by laboratories across the world have resulted in major issues in data storage and accessibility. The further demands of multilaboratory initiatives has highlighted issues when collaborators cannot import data generated within the same project but generated by different hardware types and processed by laboratory-specific work flows and analyses packages. There is an increasing need for common data standards that will allow the interchange of data between different instrumentation, search engines, and between laboratory databases. This could then lead to the establishment of data repositories from where benchmark datasets could be accessed and reanalyzed. The Human Proteome Organization is currently supporting efforts to establish such standards. The work of the Proteomics Standards Initiative has lead to the development of the mzData XML interchange standard and is now broadening its scope to produce a spectral analysis output format, mzIdent. Accompanying controlled vocabularies allow the accurate, while systematic, representation of metadata throughout both schema.

Benchmarking↗