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How Patient Organizations Can Drive FAIR Data Efforts to Facilitate Research and Health Care: A Report of the Virtual Second International Meeting on Duchenne Data Sharing, March 3, 2021

Nawel van Lin, Georgios Paliouras, Elizabeth Vroom, Peter A.C. 't Hoen, Marco Roos
<span title="2021-07-28">2021</span> <i title="IOS Press"> <a target="_blank" rel="noopener" href="https://fatcat.wiki/container/fo6caz2s6bbf7nszl3dwucmhfm" style="color: black;">Journal of Neuromuscular Diseases</a> </i> &nbsp;
Since 2018, the DMD/BMD patient community has been committed to making DMD/BMD-related data FAIR, ie, Findable, Accessible, Interoperable, and Reusable.  ...  For patients with rare diseases such as Duchenne and Becker muscular dystrophy (DMD/BMD), access to their health data is key to being able to advocate for themselves and be in control of their care.  ...  By means of dynamic informed consent, 237 patients can determine who has access to their data 238 and when.  ... 
<span class="external-identifiers"> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.3233/jnd-210721">doi:10.3233/jnd-210721</a> <a target="_blank" rel="external noopener" href="https://www.ncbi.nlm.nih.gov/pubmed/34334415">pmid:34334415</a> <a target="_blank" rel="external noopener" href="https://pubmed.ncbi.nlm.nih.gov/PMC8673524/">pmcid:PMC8673524</a> <a target="_blank" rel="external noopener" href="https://fatcat.wiki/release/zlmny5ljknbefilm2o7ogpzuom">fatcat:zlmny5ljknbefilm2o7ogpzuom</a> </span>
<a target="_blank" rel="noopener" href="https://web.archive.org/web/20210803211047/https://content.iospress.com/download/journal-of-neuromuscular-diseases/jnd210721?id=journal-of-neuromuscular-diseases%2Fjnd210721" title="fulltext PDF download" data-goatcounter-click="serp-fulltext" data-goatcounter-title="serp-fulltext"> <button class="ui simple right pointing dropdown compact black labeled icon button serp-button"> <i class="icon ia-icon"></i> Web Archive [PDF] <div class="menu fulltext-thumbnail"> <img src="https://blobs.fatcat.wiki/thumbnail/pdf/41/46/4146321848ea60f615d27ff61524003cb788254e.180px.jpg" alt="fulltext thumbnail" loading="lazy"> </div> </button> </a> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.3233/jnd-210721"> <button class="ui left aligned compact blue labeled icon button serp-button"> <i class="unlock alternate icon" style="background-color: #fb971f;"></i> Publisher / doi.org </button> </a> <a target="_blank" rel="external noopener" href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8673524" title="pubmed link"> <button class="ui compact blue labeled icon button serp-button"> <i class="file alternate outline icon"></i> pubmed.gov </button> </a>

How NWO supports and stimulates open and FAIR Data

Maria Cruz
<span title="2021-11-16">2021</span> <i title="Zenodo"> Zenodo </i> &nbsp;
Presentation given by Maria Cruz at the launch event of the Groningen Digital Competence Center: In all FAIRness: discussing the future of research data held online on 15 November 2021.  ...  Research Data Management • Researchers are expected to carefully manage all research data generated as part of NWO funded projects. • As open and FAIR as possible, closed if necessary. • As a minimum,  ...  access and interpret data.  ... 
<span class="external-identifiers"> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5281/zenodo.5704543">doi:10.5281/zenodo.5704543</a> <a target="_blank" rel="external noopener" href="https://fatcat.wiki/release/6w6tzwkeufhwhplpr7nfg3wvo4">fatcat:6w6tzwkeufhwhplpr7nfg3wvo4</a> </span>
<a target="_blank" rel="noopener" href="https://web.archive.org/web/20211116120410/https://zenodo.org/record/5704543/files/15%20November%202021%20Launch%20Groningen%20DCC.pdf" title="fulltext PDF download" data-goatcounter-click="serp-fulltext" data-goatcounter-title="serp-fulltext"> <button class="ui simple right pointing dropdown compact black labeled icon button serp-button"> <i class="icon ia-icon"></i> Web Archive [PDF] <div class="menu fulltext-thumbnail"> <img src="https://blobs.fatcat.wiki/thumbnail/pdf/21/a3/21a3a5627c7a1ed42d33b390d5c5862745446f8c.180px.jpg" alt="fulltext thumbnail" loading="lazy"> </div> </button> </a> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5281/zenodo.5704543"> <button class="ui left aligned compact blue labeled icon button serp-button"> <i class="unlock alternate icon" style="background-color: #fb971f;"></i> zenodo.org </button> </a>

Data Practices, Data Management and FAIR Principles: An Educational Scenario by the EnTIRE project

Péter Kakuk
<span title="2020-10-02">2020</span> <i title="Zenodo"> Zenodo </i> &nbsp;
It focuses on issues regarding: Data protection and consent; FAIR principles for data management and stewardship; Data copyright and data citation; Data for personal research use.  ...  This scenario presents a hypothetical narrative concerning data practices and data management and their links with research ethics and research integrity.  ...  How would you ensure fair data management in such a large project that collects and processes a wide diversity of data? 4.  ... 
<span class="external-identifiers"> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5281/zenodo.4063648">doi:10.5281/zenodo.4063648</a> <a target="_blank" rel="external noopener" href="https://fatcat.wiki/release/xr6eb4neyfbhpodyycqwdsqilq">fatcat:xr6eb4neyfbhpodyycqwdsqilq</a> </span>
<a target="_blank" rel="noopener" href="https://web.archive.org/web/20201003005347/https://zenodo.org/record/4063648/files/EnTIRE%20WP5%20Scenario%20No.%206%20from%20D.5.4.pdf" title="fulltext PDF download" data-goatcounter-click="serp-fulltext" data-goatcounter-title="serp-fulltext"> <button class="ui simple right pointing dropdown compact black labeled icon button serp-button"> <i class="icon ia-icon"></i> Web Archive [PDF] <div class="menu fulltext-thumbnail"> <img src="https://blobs.fatcat.wiki/thumbnail/pdf/1b/d9/1bd957438cf3673b08542b5886234d90dd2b973c.180px.jpg" alt="fulltext thumbnail" loading="lazy"> </div> </button> </a> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5281/zenodo.4063648"> <button class="ui left aligned compact blue labeled icon button serp-button"> <i class="unlock alternate icon" style="background-color: #fb971f;"></i> zenodo.org </button> </a>

Helis Academy course FAIR data stewardship 2021, Day 2, Data security and privacy

Erik Flikkenschild
<span title="2021-03-18">2021</span> <i title="Zenodo"> Zenodo </i> &nbsp;
This presentation is part of the 3rd edition of the Helis Academy FAIR data stewardship (for life sciences) course Day 2, March 18, 2021 https://www.aanmelder.nl/fair-data-stewardship-2021 https://helisacademy.com  ...  /en/data-analysis-stewardship Topic: data security and privacy  ...  ) AllegroGraph WebView (lumc.nl) (demo) You can use the LUMC FDP to demonstrate the data visiting concept 2021: IT ACCESS CONTROL ARCHITECTURE TRUSTED ACCESS CONTROL TO SYNTHETIC DATA & HEALTH-CARA  ... 
<span class="external-identifiers"> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5281/zenodo.4630130">doi:10.5281/zenodo.4630130</a> <a target="_blank" rel="external noopener" href="https://fatcat.wiki/release/bbb6u3ywfzg3bmvxexzz5rspsu">fatcat:bbb6u3ywfzg3bmvxexzz5rspsu</a> </span>
<a target="_blank" rel="noopener" href="https://web.archive.org/web/20210408055346/https://zenodo.org/record/4630131/files/Helis_Day_2_5_data_privacy_security_Flikkenschild_20210318.pdf" title="fulltext PDF download" data-goatcounter-click="serp-fulltext" data-goatcounter-title="serp-fulltext"> <button class="ui simple right pointing dropdown compact black labeled icon button serp-button"> <i class="icon ia-icon"></i> Web Archive [PDF] <div class="menu fulltext-thumbnail"> <img src="https://blobs.fatcat.wiki/thumbnail/pdf/4a/ee/4aeefd5972d62e4b17ff493de7b42dee7d3c4f90.180px.jpg" alt="fulltext thumbnail" loading="lazy"> </div> </button> </a> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5281/zenodo.4630130"> <button class="ui left aligned compact blue labeled icon button serp-button"> <i class="unlock alternate icon" style="background-color: #fb971f;"></i> zenodo.org </button> </a>

CAPABLE Data Management Plan

Enea Parimbelli, Ronald Cornet, Matteo Gabetta, Valentina Tibollo, Barbara Bottalico, Itske Fraterman, Annelies Boekhout, Flora Gilboa, Silvana Quaglini
<span title="2020-08-03">2020</span> <i title="Zenodo"> Zenodo </i> &nbsp;
This Data Management Plan (DMP) addresses the relevant aspects of making data FAIR – findable, accessible, interoperable and re-usable.  ...  In this context, the present deliverable 1.2 -Data Management Plan (DMP) -addresses the relevant aspects of making data FAIR -findable, accessible, interoperable and re-usable.  ...  Data access is enabled via standard software components, e.g., a (FAIR) SPARQL endpoint, an odbc access point.  ... 
<span class="external-identifiers"> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5281/zenodo.3970579">doi:10.5281/zenodo.3970579</a> <a target="_blank" rel="external noopener" href="https://fatcat.wiki/release/rwb2eh7vcrgzxbbiioafem3rjm">fatcat:rwb2eh7vcrgzxbbiioafem3rjm</a> </span>
<a target="_blank" rel="noopener" href="https://web.archive.org/web/20200815020146/https://zenodo.org/record/3970580/files/CAPABLE-D1.2_Data%20Management%20Plan.pdf" title="fulltext PDF download" data-goatcounter-click="serp-fulltext" data-goatcounter-title="serp-fulltext"> <button class="ui simple right pointing dropdown compact black labeled icon button serp-button"> <i class="icon ia-icon"></i> Web Archive [PDF] <div class="menu fulltext-thumbnail"> <img src="https://blobs.fatcat.wiki/thumbnail/pdf/82/4a/824ab9119412810f0cc119bdbfc850a92ef5038a.180px.jpg" alt="fulltext thumbnail" loading="lazy"> </div> </button> </a> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5281/zenodo.3970579"> <button class="ui left aligned compact blue labeled icon button serp-button"> <i class="unlock alternate icon" style="background-color: #fb971f;"></i> zenodo.org </button> </a>

Research Data: The Future of FAIR White paper

Varsha Khodiyar, Heidi Laine, David O'Brien, Raul Rodriguez-Esteban, Yasemin Türkyilmaz-Van Der Velden, Grace Baynes, Matthew Brack, Anne Cambon-Thomsen, David Carr, Elisa Carrus, Louise Chisholm, Claudia Civai (+4 others)
<span title="2021-04-20">2021</span> <i title="figshare"> figshare.com </i> &nbsp;
2021 marks five years since the publication of the FAIR data principles.  ...  With a wide range of opinions and commentary, this white paper looks at the real-world impact of FAIR, and considers what will be next for research data and open science.Find out about research data at  ...  Opinion: Fair management of genetic data Heidi Laine The FAIR principles are for machine-friendly data management.  ... 
<span class="external-identifiers"> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.6084/m9.figshare.14393552.v1">doi:10.6084/m9.figshare.14393552.v1</a> <a target="_blank" rel="external noopener" href="https://fatcat.wiki/release/vpdcbsaaf5dpjat6dwnxr7hrvm">fatcat:vpdcbsaaf5dpjat6dwnxr7hrvm</a> </span>
<a target="_blank" rel="noopener" href="https://web.archive.org/web/20210420173643/https://s3-eu-west-1.amazonaws.com/pfigshare-u-files/27619388/Future_of_FAIR_white_paper.pdf" title="fulltext PDF download" data-goatcounter-click="serp-fulltext" data-goatcounter-title="serp-fulltext"> <button class="ui simple right pointing dropdown compact black labeled icon button serp-button"> <i class="icon ia-icon"></i> Web Archive [PDF] <div class="menu fulltext-thumbnail"> <img src="https://blobs.fatcat.wiki/thumbnail/pdf/44/ed/44edbbd997e8f3d1cdf0f0520b8a91ab94862ef6.180px.jpg" alt="fulltext thumbnail" loading="lazy"> </div> </button> </a> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.6084/m9.figshare.14393552.v1"> <button class="ui left aligned compact blue labeled icon button serp-button"> <i class="unlock alternate icon" style="background-color: #fb971f;"></i> figshare.com </button> </a>

Fair data for next-generation management of multiple sclerosis

Liesbet M Peeters
<span title="2017-12-19">2017</span> <i title="SAGE Publications"> <a target="_blank" rel="noopener" href="https://fatcat.wiki/container/kulx3aann5brlm7mg2jhcm6puq" style="color: black;">Multiple Sclerosis</a> </i> &nbsp;
The key to reach this next level is FAIR data.  ...  Here, a method to revolutionize management of MS to a personalized, individualized and precision level is outlined. The key to achieve this next level is FAIR data.  ... 
<span class="external-identifiers"> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.1177/1352458517748475">doi:10.1177/1352458517748475</a> <a target="_blank" rel="external noopener" href="https://www.ncbi.nlm.nih.gov/pubmed/29254434">pmid:29254434</a> <a target="_blank" rel="external noopener" href="https://pubmed.ncbi.nlm.nih.gov/PMC6052432/">pmcid:PMC6052432</a> <a target="_blank" rel="external noopener" href="https://fatcat.wiki/release/anxqxyujfzbpji2nxo2y6ipkiy">fatcat:anxqxyujfzbpji2nxo2y6ipkiy</a> </span>
<a target="_blank" rel="noopener" href="https://web.archive.org/web/20190307135521/http://pdfs.semanticscholar.org/d781/8ab3af7e204f117b3d218df33f38ef7e0914.pdf" title="fulltext PDF download" data-goatcounter-click="serp-fulltext" data-goatcounter-title="serp-fulltext"> <button class="ui simple right pointing dropdown compact black labeled icon button serp-button"> <i class="icon ia-icon"></i> Web Archive [PDF] <div class="menu fulltext-thumbnail"> <img src="https://blobs.fatcat.wiki/thumbnail/pdf/d7/81/d7818ab3af7e204f117b3d218df33f38ef7e0914.180px.jpg" alt="fulltext thumbnail" loading="lazy"> </div> </button> </a> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.1177/1352458517748475"> <button class="ui left aligned compact blue labeled icon button serp-button"> <i class="external alternate icon"></i> sagepub.com </button> </a> <a target="_blank" rel="external noopener" href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6052432" title="pubmed link"> <button class="ui compact blue labeled icon button serp-button"> <i class="file alternate outline icon"></i> pubmed.gov </button> </a>

Applying the FAIR principles to data in a hospital: an interdisciplinary collaboration

Núria Queralt-Rosinach
<span title="2021-09-22">2021</span> <i title="Zenodo"> Zenodo </i> &nbsp;
built on top of FAIR patient data.  ...  Our work demonstrates that a FAIR research data management plan based on interdisciplinary collaboration and ontological models for data and metadata, Semantic Web technologies, and FAIR Data Points can  ...  users' questions (shared knowledge) • FAIRification difficulties:FDPs publish structured metadata for machines to interpret how to access • "count number of patients" • "retrieve LUMC cytokines measurements  ... 
<span class="external-identifiers"> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5281/zenodo.5543328">doi:10.5281/zenodo.5543328</a> <a target="_blank" rel="external noopener" href="https://fatcat.wiki/release/o22cm67gpvdpbpnq5qpp2brdme">fatcat:o22cm67gpvdpbpnq5qpp2brdme</a> </span>
<a target="_blank" rel="noopener" href="https://web.archive.org/web/20211003105224/https://zenodo.org/record/5543329/files/Applying%20the%20FAIR%20principles%20to%20data%20in%20a%20hospital_%20an%20interdisciplinary%20collaboration.pdf" title="fulltext PDF download" data-goatcounter-click="serp-fulltext" data-goatcounter-title="serp-fulltext"> <button class="ui simple right pointing dropdown compact black labeled icon button serp-button"> <i class="icon ia-icon"></i> Web Archive [PDF] <div class="menu fulltext-thumbnail"> <img src="https://blobs.fatcat.wiki/thumbnail/pdf/dc/fb/dcfb4f19b391a212423135f4c25e89924f7470b8.180px.jpg" alt="fulltext thumbnail" loading="lazy"> </div> </button> </a> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5281/zenodo.5543328"> <button class="ui left aligned compact blue labeled icon button serp-button"> <i class="unlock alternate icon" style="background-color: #fb971f;"></i> zenodo.org </button> </a>

CAPABLE D3.1: Information Architecture

Ronald Cornet, Francesca Polce, Rowdy de Groot
<span title="2021-07-19">2021</span> <i title="Zenodo"> Zenodo </i> &nbsp;
The CAPABLE project has a strong commitment to making the data collected during the project follow the FAIR Principles, addressing the Findability, Accessibility, Interoperability, and Re-usability of  ...  To maximally support the Interoperability Principle, data management and metadata management are based as much as possible on standard data models and terminologies.  ...  Adherence to the FAIR principles allows to make CAPABLE data accessible and reusable by third parties outside the project.  ... 
<span class="external-identifiers"> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5281/zenodo.5159072">doi:10.5281/zenodo.5159072</a> <a target="_blank" rel="external noopener" href="https://fatcat.wiki/release/xaf27hdzhrbevmj3cez5dr33we">fatcat:xaf27hdzhrbevmj3cez5dr33we</a> </span>
<a target="_blank" rel="noopener" href="https://web.archive.org/web/20210806124225/https://zenodo.org/record/5159073/files/CPABLE_D3.1_Information_Architecture.pdf" title="fulltext PDF download" data-goatcounter-click="serp-fulltext" data-goatcounter-title="serp-fulltext"> <button class="ui simple right pointing dropdown compact black labeled icon button serp-button"> <i class="icon ia-icon"></i> Web Archive [PDF] <div class="menu fulltext-thumbnail"> <img src="https://blobs.fatcat.wiki/thumbnail/pdf/ed/32/ed322cfd6dd6ccdd9ca4bd30d1168c2af2878506.180px.jpg" alt="fulltext thumbnail" loading="lazy"> </div> </button> </a> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5281/zenodo.5159072"> <button class="ui left aligned compact blue labeled icon button serp-button"> <i class="unlock alternate icon" style="background-color: #fb971f;"></i> zenodo.org </button> </a>

GERONTE DATA MANAGEMENT PLAN (DMP) [article]

CFE Bacles, P Davis, ME Hamaker
<span title="2021-12-10">2021</span> <i title="Zenodo"> Zenodo </i> &nbsp;
As GERONTE participates in the Horizon 2020 Open Research Data Pilot, it is intended to identify every opportunity for generating Findable Accessible Interoperable and Re-usable (FAIR) data to maximise  ...  It contains information about the main elements of the Data Management policy that will be used by the Consortium with respect to the project research data.  ...  2020 guidelines on FAIR data management.  ... 
<span class="external-identifiers"> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5281/zenodo.5772435">doi:10.5281/zenodo.5772435</a> <a target="_blank" rel="external noopener" href="https://fatcat.wiki/release/5vy7f4erajhzto7jtc4fkzuhvy">fatcat:5vy7f4erajhzto7jtc4fkzuhvy</a> </span>
<a target="_blank" rel="noopener" href="https://web.archive.org/web/20211213145709/https://zenodo.org/record/5772435/files/GERONTE_DMP_V12.pdf" title="fulltext PDF download" data-goatcounter-click="serp-fulltext" data-goatcounter-title="serp-fulltext"> <button class="ui simple right pointing dropdown compact black labeled icon button serp-button"> <i class="icon ia-icon"></i> Web Archive [PDF] <div class="menu fulltext-thumbnail"> <img src="https://blobs.fatcat.wiki/thumbnail/pdf/55/6c/556cb4c9b4eee09574f2a0ea94a445fbcef0a8ad.180px.jpg" alt="fulltext thumbnail" loading="lazy"> </div> </button> </a> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5281/zenodo.5772435"> <button class="ui left aligned compact blue labeled icon button serp-button"> <i class="unlock alternate icon" style="background-color: #fb971f;"></i> zenodo.org </button> </a>

Authorization Framework for Medical Data

Geetha Madadevaiah, RV Prasad, Amogh Hiremath, Michel Dumontier, Andre Dekker
<span title="2019-06-29">2019</span> <i title="Academy and Industry Research Collaboration Center (AIRCC)"> <a target="_blank" rel="noopener" href="https://fatcat.wiki/container/dh256fzd25e4rj4t2ex6em7nti" style="color: black;">International Journal of Database Management Systems</a> </i> &nbsp;
The framework uses a combination of Role-Based and Rule-Based Access Policies to provide security to a medical data repository as per the FAIR guidelines.  ...  Here, the authors have considered the scenario of sharing the medical data by the owner of data, say the patient, with relevant persons such as physicians, researchers, pharmacist, etc.  ...  The authors have followed a hybrid approach with a combination of Role-based and Rule-based Access to provide security to a medical RDF data.  ... 
<span class="external-identifiers"> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5121/ijdms.2019.11302">doi:10.5121/ijdms.2019.11302</a> <a target="_blank" rel="external noopener" href="https://fatcat.wiki/release/kav2izdswrbbzk2bdztjwtmeqa">fatcat:kav2izdswrbbzk2bdztjwtmeqa</a> </span>
<a target="_blank" rel="noopener" href="https://web.archive.org/web/20200207105412/https://pdfs.semanticscholar.org/0533/c7b4306ea6f721418bbb43dda166b415f897.pdf" title="fulltext PDF download" data-goatcounter-click="serp-fulltext" data-goatcounter-title="serp-fulltext"> <button class="ui simple right pointing dropdown compact black labeled icon button serp-button"> <i class="icon ia-icon"></i> Web Archive [PDF] <div class="menu fulltext-thumbnail"> <img src="https://blobs.fatcat.wiki/thumbnail/pdf/05/33/0533c7b4306ea6f721418bbb43dda166b415f897.180px.jpg" alt="fulltext thumbnail" loading="lazy"> </div> </button> </a> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5121/ijdms.2019.11302"> <button class="ui left aligned compact blue labeled icon button serp-button"> <i class="unlock alternate icon" style="background-color: #fb971f;"></i> Publisher / doi.org </button> </a>

Making the case for FAIR Data Points [article]

Angus Whyte, Ryan O'Connor, Josefine Nordling
<span title="2022-04-08">2022</span> <i title="Zenodo"> Zenodo </i> &nbsp;
As a service manager how may I assist my organisation to make research data we hold both FAIR and "as open as possible, as closed as necessary"?  ...  By contrast, Dutch data service provider SURF is applying the FDP to improve the FAIRness of an extensive dataset repository that is openly accessible by default.  ...  "To connect with real patient data you have to build access control policies on the ports, and you have to define the appointment system."  ... 
<span class="external-identifiers"> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5281/zenodo.6256838">doi:10.5281/zenodo.6256838</a> <a target="_blank" rel="external noopener" href="https://fatcat.wiki/release/hfmztpsez5frrjiuwb6yg3vxfi">fatcat:hfmztpsez5frrjiuwb6yg3vxfi</a> </span>
<a target="_blank" rel="noopener" href="https://web.archive.org/web/20220422181010/https://zenodo.org/record/6256839/files/FAIRsFAIR_MakingcaseFAIR_Data%20_Points.pdf" title="fulltext PDF download" data-goatcounter-click="serp-fulltext" data-goatcounter-title="serp-fulltext"> <button class="ui simple right pointing dropdown compact black labeled icon button serp-button"> <i class="icon ia-icon"></i> Web Archive [PDF] <div class="menu fulltext-thumbnail"> <img src="https://blobs.fatcat.wiki/thumbnail/pdf/16/20/1620ab253f3ec45badc6eea3f35cf5be2457c294.180px.jpg" alt="fulltext thumbnail" loading="lazy"> </div> </button> </a> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5281/zenodo.6256838"> <button class="ui left aligned compact blue labeled icon button serp-button"> <i class="unlock alternate icon" style="background-color: #fb971f;"></i> zenodo.org </button> </a>

Jessica Hrudey iBBA Symposium Talk: Open Science and the GDPR [article]

Jessica Hrudey
<span title="2019-06-16">2019</span> <i title="Figshare"> Figshare </i> &nbsp;
If it's too much work to anonymize data, why not just publish data (FAIR-ly) in a repository, but with controlled access (the depositor decides who gets to re-use the data)?  ...  Data that are FAIR are: • Findable • Accessible • Interoperable • Reusable WHAT IS OPEN DATA?  ...  Who determines and manages access to and sharing of the data? • Departmental data managers? • Data access committees (similar to ethics committees)? • Responsibility of the department head?  ... 
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<a target="_blank" rel="noopener" href="https://web.archive.org/web/20200209133821/https://s3-eu-west-1.amazonaws.com/pfigshare-u-files/15491798/Hrudey201967OpenScienceSymposium.pdf" title="fulltext PDF download" data-goatcounter-click="serp-fulltext" data-goatcounter-title="serp-fulltext"> <button class="ui simple right pointing dropdown compact black labeled icon button serp-button"> <i class="icon ia-icon"></i> Web Archive [PDF] <div class="menu fulltext-thumbnail"> <img src="https://blobs.fatcat.wiki/thumbnail/pdf/27/b7/27b7fca6b4acab83e461c5557343628f67c8ad60.180px.jpg" alt="fulltext thumbnail" loading="lazy"> </div> </button> </a> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.6084/m9.figshare.8281697"> <button class="ui left aligned compact blue labeled icon button serp-button"> <i class="unlock alternate icon" style="background-color: #fb971f;"></i> figshare.com </button> </a>

De-novo FAIRification via an Electronic Data Capture system by automated transformation of filled electronic Case Report Forms into machine-readable data [article]

Martijn G. Kersloot, Annika Jacobsen, Karlijn H.J. Groenen, Bruna dos Santos Vieira, Rajaram Kaliyaperumal, Ameen Abu-Hanna, Ronald Cornet, Peter A.C. 't Hoen, Marco Roos, Leo Schultze Kool, Derk L. Arts
<span title="2021-03-08">2021</span> <i title="Cold Spring Harbor Laboratory"> medRxiv </i> &nbsp; <span class="release-stage" >pre-print</span>
data management and data entry personnel.  ...  Introduction Existing methods to make data Findable, Accessible, Interoperable, and Reusable (FAIR) are usually carried out in a post-hoc manner: after the research project is conducted and data are collected  ...  A FAIR Data Point is a metadata repository that provides access to metadata of digital objects in a FAIR way [17] .  ... 
<span class="external-identifiers"> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.1101/2021.03.04.21250752">doi:10.1101/2021.03.04.21250752</a> <a target="_blank" rel="external noopener" href="https://fatcat.wiki/release/asmor7cw4vbnzamdagqomwq7be">fatcat:asmor7cw4vbnzamdagqomwq7be</a> </span>
<a target="_blank" rel="noopener" href="https://web.archive.org/web/20210717005023/https://www.medrxiv.org/content/medrxiv/early/2021/03/08/2021.03.04.21250752.full.pdf" title="fulltext PDF download" data-goatcounter-click="serp-fulltext" data-goatcounter-title="serp-fulltext"> <button class="ui simple right pointing dropdown compact black labeled icon button serp-button"> <i class="icon ia-icon"></i> Web Archive [PDF] <div class="menu fulltext-thumbnail"> <img src="https://blobs.fatcat.wiki/thumbnail/pdf/4f/dd/4fdd5b31e332a51414f1f61420824ff94c84f254.180px.jpg" alt="fulltext thumbnail" loading="lazy"> </div> </button> </a> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.1101/2021.03.04.21250752"> <button class="ui left aligned compact blue labeled icon button serp-button"> <i class="external alternate icon"></i> medrxiv.org </button> </a>

EATRIS Summer School in Precision Medicine - German Human Genome-Phenome Archive

Deepak Unni
<span title="2021-06-15">2021</span> <i title="Zenodo"> Zenodo </i> &nbsp;
GHGA aims provide a national infrastructure for secure and safe storage, access management, dissemination, and anlaysis of human omics data under a coherent ethical-legal framework.  ...  GHGA aims to address the needs for establishing a national genome archive for human genome data while tackling the aforementioned challenges.  ...  GHGA GHGA • Part of the NFDI (National Research Data Infrastructure) Platform for long-term FAIR data archival of human omics data, connected to major omics centers in Germany • Controlled access management  ... 
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<a target="_blank" rel="noopener" href="https://web.archive.org/web/20210616113705/https://zenodo.org/record/4954901/files/EATRIS%20Summer%20School%20in%20Precision%20Medicine%20-%20German%20Human%20Genome-Phenome%20Archive.pdf" title="fulltext PDF download" data-goatcounter-click="serp-fulltext" data-goatcounter-title="serp-fulltext"> <button class="ui simple right pointing dropdown compact black labeled icon button serp-button"> <i class="icon ia-icon"></i> Web Archive [PDF] <div class="menu fulltext-thumbnail"> <img src="https://blobs.fatcat.wiki/thumbnail/pdf/12/a9/12a9d7e0f6cb7cc37ce54632a0f1b574833a82f7.180px.jpg" alt="fulltext thumbnail" loading="lazy"> </div> </button> </a> <a target="_blank" rel="external noopener noreferrer" href="https://doi.org/10.5281/zenodo.4954901"> <button class="ui left aligned compact blue labeled icon button serp-button"> <i class="unlock alternate icon" style="background-color: #fb971f;"></i> zenodo.org </button> </a>
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