The posts are filled with enthusiastic phrases such as 'congratulations' and phrases like 'new work' and 'contribute to an ecosystem,' indicating strong support and interest in the publication. The tone is positive, emphasizing the significance of the FAIRification process and its potential to improve research, which reflects the perceived impact on advancing data management for rare diseases.
AgreementModerate agreement
Most discussions express strong support and enthusiasm for the publication and its contributions to FAIR data practices.
InterestHigh interest
The mention of open-access publication, new processes, and contributions to rare disease research shows high interest.
EngagementModerate engagement
Posts include acknowledgments, links to preprints, and excitement about the work, indicating active engagement.
ImpactModerate impact
By highlighting the development of a process for rare disease registries and ecosystems of resources, the discussions suggest moderate to high potential impact in this research area.
Abstract in brief
Patient data registries help researchers find and use data about rare diseases more easily, making it easier to study them.
The process to make these registries "FAIR" (Findable, Accessible, Interoperable, and Reusable) includes five steps, from planning to using the data.
This new way of handling data can be copied by other rare disease registries to make research better and more efficient.
#Publication: #EJPRD contributed to the development and implementation of a process for making a #RareDisease Registry #FAIR from its conception.
More info on the preprint "The de novo FAIRification process of a #registry for vascular anomalies" here: https://t.co/hwwXb8MIMX
Dec 18, 2020 · 3 likes · 4,042 followersView post →
NR
Núria Queralt Rosinach
@nqueralt · X
New preprint with BioSemantics Group contribution: "The de novo FAIRification process of a #registry for vascular anomalies". With this work authors envision to contribute to an ecosystem of #FAIR #raredisease resources https://t.co/W67VMdOJGy
Congrats to Karlijn Groenen for her successful effort in leading this open-access publication on “The de novo FAIRification process of a registry for vascular anomalies”!
--------
I’m very happy to share that our work “The de novo FAIRification process…https://t.co/Fk8n7B3wag
Out now!
“The de novo FAIRification process of a registry for vascular anomalies”, published in @ojrarediseases.
New work from @pacthoen and team.
https://t.co/14ZsLfzdEy
#xomics #bioinformatics #FAIRification https://t.co/VkcZjxHacJ
This video discusses making patient data registries for rare diseases more accessible and reusable through the FAIR principles, highlighting the five-step process from planning to data utilization to improve research…
Congrats to Karlijn Groenen for her successful effort in leading this open-access publication on “The de novo FAIRification process of a registry for vascular anomalies”!
--------
I’m very happy to share that our work “The de novo FAIRification process…https://t.co/Fk8n7B3wag
Out now!
“The de novo FAIRification process of a registry for vascular anomalies”, published in @ojrarediseases.
New work from @pacthoen and team.
https://t.co/14ZsLfzdEy
#xomics #bioinformatics #FAIRification https://t.co/VkcZjxHacJ
#Publication: #EJPRD contributed to the development and implementation of a process for making a #RareDisease Registry #FAIR from its conception.
More info on the preprint "The de novo FAIRification process of a #registry for vascular anomalies" here: https://t.co/hwwXb8MIMX
Dec 18, 2020 · 3 likes · 4,042 followersView post →
NR
Núria Queralt Rosinach
@nqueralt · X
New preprint with BioSemantics Group contribution: "The de novo FAIRification process of a #registry for vascular anomalies". With this work authors envision to contribute to an ecosystem of #FAIR #raredisease resources https://t.co/W67VMdOJGy
European Joint Programme on Rare Diseases | EJP RD | Progetto ...
News
DOI: 10.1186/s13023-021-02004-y. Understanding signaling and metabolic paths using semantified and harmonized information about biological interactions (si ...