All content matching "data"

Sharing of research data

Geoffrey Boulton lays out the case for sharing scientific data, and advises that the UK's Royal Society has established a working group to examine the implementation issues and to make recommendations.

CDISC | Strength Through Collaboration

Collaboration which allows protocol build, data collection and data sharing via free and open access web support.  

Strengthening Research through Data Sharing

Elizabeth Warren addresses the policy, privacy, and practical issues affecting data sharing in clinical trails. 

A Global, Neutral Platform for Sharing Trial Data

Brigham and Women's Hospital–Harvard University's Multi-Regional Clinical Trials Center is designing a platform to link existing data-sharing platforms and communities and host data from investigators who want to share data but lack the resources to do so.

From Patient to Patient — Sharing the Data from Clinical Trials

This article asks the question: how — and how much — to share, where and in what format data should be stored and accessed, and how to protect the privacy of the trial participants.

Data sharing guidance for CRUK researchers initiatives and repositories to support clinical rseacrhers with data management and sharing contents

Cancer Research UK highlights some key initiatives and repositories which may provide tools and guidance for data sharing in the academic clinical trial field.

Research Data Management and Sharing

The University of Carolina offers a free eLearning course about data management and sharing.

The ethics of 'Trials within Cohorts' (TWiCs) 2nd international symposium

The two-day symposium enabled an international group to meet and share experiences of the TwiCs design and to discuss plans for future research.

Research Data Oxford » Data management planning

The University of Oxford's tips for data management planning.

Association for Clinical Data Management: Training

The ACDM represents professionals working in the management of clinical data

Open Access Policy Frequently Asked Questions - Bill & Melinda Gates Foundation

The Bill and Melinda Gates foundation answers questions about their open access policy. 

Data sharing statements for clinical trials

The ICMJE introduces it's vsion for a global research community in which sharing deidentified data becomes the norm.

A methodological approach for assessing the uptake of core outcome sets using ClinicalTrials.gov: findings from a review of randomised controlled trials of rheumatoid arthritis

This study assess the uptake of the rheumatoid arthritis core outcome set using a new assessment method of calculating uptake from data in clinical trial registry entries.

Good Practice Principles for Sharing Individual Participant Data from Publicly Funded Clinical Trials (Version 1) GOOD PRACTICE PRINCIPLES FOR SHARING INDIVIDUAL PARTICIPANT DATA FROM PUBLICLY FUNDED

Thid guide offers good practice principles for sharing data from clinical trails

Section 2 Guidelines and standards A Planning and conducting MRC-funded research

Guidelines for MRC research and management of data. 

Pharmaceutical companies' policies on access to trial data, results, and methods: audit study

This study looks at the commitments made by companies to transparency of trials.

Making research data repositories visible: The re3data.org registry

This article describes the heterogeneous RDR landscape. Further, the article outlines the features of re3data.org, and shows how this registry helps to identify appropriate repositories for storage and search of research data.    

Raw data from clinical trials: Within reach?

This article argues in favor of more widespread availability of data from clinical research.

Are Scientific Data Repositories Coping with Research Data Publishing?

This study analyses the solutions offered by generalist scientific data repositories.

The Yale Open Data Access (YODA) Project — A Mechanism for Data Sharing

The Yale Open Data Access (YODA) Project is one of several pioneering data-sharing models in use. It uses a “trusted intermediary” approach, in which an independent partner provides support, accountability, fairness, and transparency.

Sharing Data from Cardiovascular Clinical Trials — A Proposal

ACCESS CV proposes a secure method of sharing sensitive patient data that balances the legitimate desire of the scientific community for data access with the responsibility to ensure high-quality analyses and protection of patients’ expectation of privacy.

Bridging the Data-Sharing Divide — Seeing the Devil in the Details, Not the Other Camp

Lisa Rosenbaum looks at both sides of the data sharing discussion. 

Avoiding Data Dumpsters — Toward Equitable and Useful Data Sharing

Although some researchers remain wary about sharing data, recent policies and proposals mean that data sharing, in one form or another, is inevitable.

Incentives for Clinical Trialists to Share Data

Sharing of data from clinical trials benefits patients by enabling new discoveries, meta-analyses, and confirmation of published results.

Sharing Clinical Trial Data: A Proposal from the International Committee of Medical Journal Editors

The International Committee of Medical Journal Editors (ICMJE) believes that there is an ethical obligation to responsibly share data generated by interventional clinical trials.

A systematic review of motivational interviewing for weight loss among adults in primary care

Motivational interviewing (MI) is a client-centred method of intervention focused on enhancing intrinsic motivation and behaviour change. This article looks at MI in adults in primary care. 

Effectiveness of a motivational interviewing intervention on weight loss, physical activity and cardiovascular disease risk factors: a randomised controlled trial with a 12-month post-intervention fol

This is the first study to document the longer-term effects of adapted motivational interviewing, delivered in the primary care setting, on BMI, physical activity and related CVD risk factors.

Empirical study of data sharing by authors publishing in PLoS journals

This study determines how well authors comply with data sharing policies in Clinical Research Trails. 

Preparing raw clinical data for publication: guidance for journal editors, authors, and peer reviewers

Iain Hrynaszkiewicz and colleagues propose a minimum standard for de-identifying datasets to ensure patient privacy when sharing clinical research data.

The importance of clinical trial data sharing: toward more open science

The double-edged sword of open access to research data. 

Sharing Clinical Research Data City: Washington, D.C. Publisher: National Academies Press

This e-book covers benefits, barriers and models for data sharing. 

Data Sharing at a Crossroads

The clinical research community is at an important crossroads about sharing data. 

BioSharing: curated and crowd-sourced metadata standards, databases and data policies in the life sciences

BioSharing harnesses community curation to collate and cross-reference resources across the life sciences from around the world. 

Data sharing statements for clinical trials: a requirement of the International Committee of Medical Journal Editors

The ICMJ gives its vision for a global research community in which sharing de-identified data becomes the norm.

Blockchains for Data Sharing in Clinical Research: Trust in a Trustless World

Data sharing is now a major theme in clinical research. However, effective, ethical sharing of clinical research data requires trust: research subjects must trust investigators to preserve their privacy, investigators must trust each other to give credit where credit is due, and the integrity of the entire research enterprise must be trusted by all. 

Data Sharing; Transparency Initiative - The Multi-Regional Clinical Trials Center of Harvard and Brigham and Women's Hospital

The Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard (MRCT) aims to improve the integrity, safety, and rigor of global clinical trials.

Clinical Trial Data Sharing

Barbara Bierer presents changes in data sharing, and gives solutions to challenges facing the feild. 

The Project Data Sphere Initiative: Accelerating Cancer Research by Sharing Data

Access to large, late-phase, cancer-trial data sets has the potential to transform cancer research by optimizing research efficiency and accelerating progress toward meaningful improvements in cancer care.

A SOA-Based Platform to Support Clinical Data Sharing

This article looks at the development of software to enhance the integration between patient-care practice and medical research.

Feasibility, Process, and Outcomes of Cardiovascular Clinical Trial Data Sharing

Data sharing is as an expanding initiative for enhancing trust in the clinical research enterprise

Introduction to Research Electronic Data Capture (REDCap) and REDCap2SDTM, a Conversion Tool to Facilitate Clinical Research Data Sharing

A new tool for the capture and conversion of clinical data is introduced as a way to encourage reuse of data and to reduce workloads in new studies. 

Data sharing through an NIH central database repository: a cross-sectional survey of BioLINCC users

This article assesses the use of the BioLINCC by clinical researchers. 

Clinical research data sharing: what an open science world means for researchers involved in evidence synthesis

This article looks at how data sharing could change and challenge design, conduct, and reporting of systematic reviews and meta-analyses for Clinical Research, as well as it's impact on those involved in evidence synthesis. 

Data sharing and the evolving role of statisticians

Statisticians are ambassadors for data sharing and are central to its success; this article looks at how the role is changing with new technologies and trends for data transparency. 

Data Sharing

The article poses the question: How would data sharing work best?

Development of an open-source, flexible framework for complex inter-institutional disparate data sharing and collaboration

The devolpment of a data sharing database makes it easier to harmonize and manage for data mining.

Technical and policy approaches to balancing patient privacy and data sharing in clinical and translational research.

In this paper, we review several aspects of the privacy-related problems associated with data sharing for clinical research from technical and policy perspectives.

Open Science and Data sharing in Clinical research: Basing Informed Decisions on the Totality of Evidence

Basing Informed Decisions on the Totality of the Evidence

Application Description and Policy Model in Collaborative Environment for Sharing of Information on Epidemiological and Clinical Research Data Sets

This article describes a web appliaction for data sharing for clinical research. 

Biomedical Data Sharing and Reuse: Attitudes and Practices of Clinical and Scientific Research Staff

This study investigates these differences in experiences with and perceptions about sharing data, as well as barriers to sharing among clinical and basic science researchers.

The Changing Structure of Industry-Sponsored Clinical Research: Pioneering Data Sharing and Transparency

This article looks at the thriving interest in open science and the inevitable widespread adoption of data, and how the two can be managed. 

Approaches and Costs for Sharing Clinical Research Data

This article looks at the complex issues behind data sharing in clinical trials. 

Sharing clinical research data in the United States under the health insurance portability and accountability act and the privacy rule

This article looks at the interaction in the USA between sharing data from clinical trails and the Privacy Rule adopted under the Health Insurance Portability and Accountability Act.

Sharing Privacy Protected and Statistically Sound Clinical Research Data Using Outsourced Data Storage

This article proposes a controlled secure aggregation protocol to secure both privacy and accuracy when researchers outsource their clinical research data for sharing

DICOM for quantitative imaging biomarker development: a standards based approach to sharing clinical data and structured PET/CT analysis results in head and neck cancer research

Article on the devolpment of Imaging biomarkers and the need for data sharing for this. 

IMPACT Observatory: tracking the evolution of clinical trial data sharing and research integrity

The objective of this paper is to present the IMPACT Observatory as well as share some of its preliminary findings

Statistical controversies in clinical research: data access and sharing—can we be more transparent about clinical research? Let’s do what’s right for patients

The question at the center of the open-science efforts for clinical trials should not be whether data should be shared, but rather how we can usher in responsible methods for doing so.

Emerging molecular markers for the prognosis of differentiated thyroid cancer patients

A review into new molecular markers potentially able to ameliorate the prognosis in thyriod cancer patients.

Sharing of clinical trial data and research integrity

An article arguing that full transparency of clinical trial data is an essential prerequisite to achieving research integrity. 

Data Sharing Policy

The Medical Research Council's policy on data sharing.

Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings

This article discusses the results of a systematic review and multisite qualitative study of key stakeholders’ perspectives on best practices in ethical data sharing in low- and middle-income settings.

Sharing Individual-Level Health Research Data: Experiences, Challenges and a Research Agenda

In this paper, we share our experiences establishing data management systems and data-sharing infrastructure including a data-sharing policy, data access committee and related procedures.

Data Sharing and the Journal

The Journal seeks to show it's commitment to data sharing in the setting of clinical trials.