Cargando…

Opening clinical trial data: are the voluntary data-sharing portals enough?

Data generated by the numerous clinical trials conducted annually worldwide have the potential to be extremely beneficial to the scientific and patient communities. This potential is well recognized and efforts are being made to encourage the release of raw patient-level data from these trials to th...

Descripción completa

Detalles Bibliográficos
Autores principales: Geifman, Nophar, Bollyky, Jennifer, Bhattacharya, Sanchita, Butte, Atul J.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2015
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4642633/
https://www.ncbi.nlm.nih.gov/pubmed/26560699
http://dx.doi.org/10.1186/s12916-015-0525-y
_version_ 1782400394488446976
author Geifman, Nophar
Bollyky, Jennifer
Bhattacharya, Sanchita
Butte, Atul J.
author_facet Geifman, Nophar
Bollyky, Jennifer
Bhattacharya, Sanchita
Butte, Atul J.
author_sort Geifman, Nophar
collection PubMed
description Data generated by the numerous clinical trials conducted annually worldwide have the potential to be extremely beneficial to the scientific and patient communities. This potential is well recognized and efforts are being made to encourage the release of raw patient-level data from these trials to the public. The issue of sharing clinical trial data has recently gained attention, with many agreeing that this type of data should be made available for research in a timely manner. The availability of clinical trial data is most important for study reproducibility, meta-analyses, and improvement of study design. There is much discussion in the community over key data sharing issues, including the risks this practice holds. However, one aspect that remains to be adequately addressed is that of the accessibility, quality, and usability of the data being shared. Herein, experiences with the two current major platforms used to store and disseminate clinical trial data are described, discussing the issues encountered and suggesting possible solutions.
format Online
Article
Text
id pubmed-4642633
institution National Center for Biotechnology Information
language English
publishDate 2015
publisher BioMed Central
record_format MEDLINE/PubMed
spelling pubmed-46426332015-11-13 Opening clinical trial data: are the voluntary data-sharing portals enough? Geifman, Nophar Bollyky, Jennifer Bhattacharya, Sanchita Butte, Atul J. BMC Med Commentary Data generated by the numerous clinical trials conducted annually worldwide have the potential to be extremely beneficial to the scientific and patient communities. This potential is well recognized and efforts are being made to encourage the release of raw patient-level data from these trials to the public. The issue of sharing clinical trial data has recently gained attention, with many agreeing that this type of data should be made available for research in a timely manner. The availability of clinical trial data is most important for study reproducibility, meta-analyses, and improvement of study design. There is much discussion in the community over key data sharing issues, including the risks this practice holds. However, one aspect that remains to be adequately addressed is that of the accessibility, quality, and usability of the data being shared. Herein, experiences with the two current major platforms used to store and disseminate clinical trial data are described, discussing the issues encountered and suggesting possible solutions. BioMed Central 2015-11-11 /pmc/articles/PMC4642633/ /pubmed/26560699 http://dx.doi.org/10.1186/s12916-015-0525-y Text en © Geifman et al. 2015 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Commentary
Geifman, Nophar
Bollyky, Jennifer
Bhattacharya, Sanchita
Butte, Atul J.
Opening clinical trial data: are the voluntary data-sharing portals enough?
title Opening clinical trial data: are the voluntary data-sharing portals enough?
title_full Opening clinical trial data: are the voluntary data-sharing portals enough?
title_fullStr Opening clinical trial data: are the voluntary data-sharing portals enough?
title_full_unstemmed Opening clinical trial data: are the voluntary data-sharing portals enough?
title_short Opening clinical trial data: are the voluntary data-sharing portals enough?
title_sort opening clinical trial data: are the voluntary data-sharing portals enough?
topic Commentary
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4642633/
https://www.ncbi.nlm.nih.gov/pubmed/26560699
http://dx.doi.org/10.1186/s12916-015-0525-y
work_keys_str_mv AT geifmannophar openingclinicaltrialdataarethevoluntarydatasharingportalsenough
AT bollykyjennifer openingclinicaltrialdataarethevoluntarydatasharingportalsenough
AT bhattacharyasanchita openingclinicaltrialdataarethevoluntarydatasharingportalsenough
AT butteatulj openingclinicaltrialdataarethevoluntarydatasharingportalsenough