Orphanet J Rare Dis September 2021 PMID 34481493

The de novo FAIRification process of a registry for vascular anomalies.

Karlijn H J Groenen, Annika Jacobsen, Martijn G Kersloot, Bruna Dos Santos Vieira, Esther van Enckevort, Rajaram Kaliyaperumal, Derk L Arts, Peter A C 't Hoen, Ronald Cornet, Marco Roos, Leo Schultze Kool

Mentions

15
Peak: 5 in Sep 2021
across 3 sources since Dec 2020

Extended reach

35,191
potential audience

Total likes

12

Video views

161

Mentions per month

Dec 2020 – Jun 2025

Where it's discussed

  • X / Twitter8 posts
  • News6 articles
  • YouTube1 videos

AI synopsis

What people are saying

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.

Top posts

Most liked on X and Bluesky
ERDERA
@ERDERA_org · X

#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 followers View post →
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

Dec 16, 2020 · 3 likes · 498 followers View post →
Ronald Cornet
@ronaldcornet · X

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

Sep 10, 2021 · 3 likes · 479 followers View post →
X-omics
@OmicsNL · X

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

Sep 9, 2021 · 2 likes · 2 shares · 187 followers View post →
dazzle4rare
@dazzle4rare · X

The de novo FAIRification process of a registry for vascular anomalies https://t.co/EKeaSas1KC

Sep 5, 2021 · 1 like · 1,365 followers View post →
medRxiv
@medrxivpreprint · X

The de novo FAIRification process of a registry for vascular anomalies https://t.co/OkJxJ8qi1d #medRxiv

Dec 14, 2020 · 17,458 followers View post →

All mentions

Ronald Cornet
@ronaldcornet · X

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

Sep 10, 2021 · 3 likes · 479 followers View post →
Bioinformatics Trends 
@BinfoTrends · X

RT @OmicsNL: Out now! “The de novo FAIRification process of a registry for vascular anomalies”, published in @ojrarediseases. New work f…

Sep 9, 2021 · 2 shares · 8,183 followers View post →
CompChemBio Bot
@CompChemBioBot · X

RT @OmicsNL: Out now! “The de novo FAIRification process of a registry for vascular anomalies”, published in @ojrarediseases. New work f…

Sep 9, 2021 · 2 shares · 2,747 followers View post →
X-omics
@OmicsNL · X

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

Sep 9, 2021 · 2 likes · 2 shares · 187 followers View post →
dazzle4rare
@dazzle4rare · X

The de novo FAIRification process of a registry for vascular anomalies https://t.co/EKeaSas1KC

Sep 5, 2021 · 1 like · 1,365 followers View post →
ERDERA
@ERDERA_org · X

#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 followers View post →
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

Dec 16, 2020 · 3 likes · 498 followers View post →
medRxiv
@medrxivpreprint · X

The de novo FAIRification process of a registry for vascular anomalies https://t.co/OkJxJ8qi1d #medRxiv

Dec 14, 2020 · 17,458 followers View post →
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Jun 11, 2025 View →
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