Literature DB >> 30723254

A beginner's guide to data stewardship and data sharing.

Marcel P Dijkers1.   

Abstract

STUDY
DESIGN: A narrative review of principles, benefits and disadvantages, as well as methods of research data sharing.
OBJECTIVES: To assist prospective Spinal Cord authors and others with understanding and implementing data sharing, so that various benefits of such sharing can accrue to all spinal cord injury research stakeholders.
SETTING: International.
METHODS: The medical research and health care services literature was reviewed nonsystematically for relevant articles, and web sites were explored for information and services offered by various pertinent organizations.
RESULTS: Grant makers, professional organizations, research journals, publishers, and other entities in the research field increasingly stress the ethics as well as societal and practical benefits of data sharing, and require researchers to do so within a reasonable time after data collection ends. Sharing data, retrospectively, generally requires much time and resources, but when a data management plan is part of a research proposal from the start, costs are limited, and grant makers allow these costs to be part of a budget. There are many organizations that offer information on or even assist with preparing data for sharing and actual deposit in a data repository.
CONCLUSIONS: The requirement of data sharing is not likely to go away, and researchers interested in submitting their reports to Spinal Cord would do well to familiarize themselves with the myriad practical issues involved in preparing data for sharing.

Entities:  

Mesh:

Year:  2019        PMID: 30723254     DOI: 10.1038/s41393-018-0232-6

Source DB:  PubMed          Journal:  Spinal Cord        ISSN: 1362-4393            Impact factor:   2.772


  47 in total

1.  Open access to research data: the two sides of the coin.

Authors:  Stefan De Hert; Charles M Samama
Journal:  Eur J Anaesthesiol       Date:  2017-01       Impact factor: 4.330

2.  Open Access to data for a new, open science.

Authors:  E Giglia; A Swan
Journal:  Eur J Phys Rehabil Med       Date:  2012-12       Impact factor: 2.874

3.  Lack of data sharing in observational studies.

Authors:  Laura McDonald; Anna Schultze; Alex Simpson; Sophie Graham; Radek Wasiak; Sreeram V Ramagopalan
Journal:  BMJ       Date:  2017-10-24

Review 4.  Can psychology walk the walk of open science?

Authors:  Bradford W Hesse
Journal:  Am Psychol       Date:  2018 Feb-Mar

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

Authors:  Iain Hrynaszkiewicz; Melissa L Norton; Andrew J Vickers; Douglas G Altman
Journal:  BMJ       Date:  2010-01-28

Review 6.  Current applications and future directions for the CDISC Operational Data Model standard: A methodological review.

Authors:  Sam Hume; Jozef Aerts; Surendra Sarnikar; Vojtech Huser
Journal:  J Biomed Inform       Date:  2016-03-02       Impact factor: 6.317

7.  Increasing value and reducing waste in research design, conduct, and analysis.

Authors:  John P A Ioannidis; Sander Greenland; Mark A Hlatky; Muin J Khoury; Malcolm R Macleod; David Moher; Kenneth F Schulz; Robert Tibshirani
Journal:  Lancet       Date:  2014-01-08       Impact factor: 79.321

8.  Impact of Open Data Policies on Consent to Participate in Human Subjects Research: Discrepancies between Participant Action and Reported Concerns.

Authors:  Jorden A Cummings; Jessica M Zagrodney; T Eugene Day
Journal:  PLoS One       Date:  2015-05-20       Impact factor: 3.240

9.  Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study.

Authors:  Karen Spencer; Caroline Sanders; Edgar A Whitley; David Lund; Jane Kaye; William Gregory Dixon
Journal:  J Med Internet Res       Date:  2016-04-15       Impact factor: 5.428

10.  Evolving data access policy: The Canadian context.

Authors:  Stephanie O M Dyke; Katie M Saulnier; Tomi Pastinen; Guillaume Bourque; Yann Joly
Journal:  Facets (Ott)       Date:  2016-09-15
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  6 in total

1.  Response to Letter to the Editor by Dr Cao regarding paper titled - "Is body-weight-supported treadmill training or robotic-assisted gait training superior to overground gait training and other forms of physiotherapy in people with spinal cord injury? A systematic review".

Authors:  Jan Mehrholz; Lisa A Harvey; Simone Thomas; Bernhard Elsner
Journal:  Spinal Cord       Date:  2019-03-20       Impact factor: 2.772

2.  Reduce, reuse, recycle: good stewardship of research data.

Authors:  Marcel Dijkers
Journal:  Spinal Cord       Date:  2019-02-05       Impact factor: 2.772

Review 3.  Physiotherapy interventions for the treatment of spasticity in people with spinal cord injury: a systematic review.

Authors:  Paulo Henrique Ferreira de Araujo Barbosa; Joanne V Glinsky; Emerson Fachin-Martins; Lisa A Harvey
Journal:  Spinal Cord       Date:  2021-02-09       Impact factor: 2.772

4.  Predicting 30-Day Readmission Risk for Patients With Chronic Obstructive Pulmonary Disease Through a Federated Machine Learning Architecture on Findable, Accessible, Interoperable, and Reusable (FAIR) Data: Development and Validation Study.

Authors:  Celia Alvarez-Romero; Alicia Martinez-Garcia; Jara Ternero Vega; Pablo Díaz-Jimènez; Carlos Jimènez-Juan; María Dolores Nieto-Martín; Esther Román Villarán; Tomi Kovacevic; Darijo Bokan; Sanja Hromis; Jelena Djekic Malbasa; Suzana Beslać; Bojan Zaric; Mert Gencturk; A Anil Sinaci; Manuel Ollero Baturone; Carlos Luis Parra Calderón
Journal:  JMIR Med Inform       Date:  2022-06-02

5.  The views, perspectives, and experiences of academic researchers with data sharing and reuse: A meta-synthesis.

Authors:  Laure Perrier; Erik Blondal; Heather MacDonald
Journal:  PLoS One       Date:  2020-02-27       Impact factor: 3.240

6.  Discoverability of information on clinical trial data-sharing platforms.

Authors:  Paije Wilson; Vojtech Huser
Journal:  J Med Libr Assoc       Date:  2021-04-01
  6 in total

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