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National Registries of Rare Diseases in Europe: An Overview of the Current Situation and Experiences

Overview of attention for article published in Public Health Genomics, September 2014
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About this Attention Score

  • In the top 25% of all research outputs scored by Altmetric
  • Good Attention Score compared to outputs of the same age (77th percentile)

Mentioned by

twitter
8 tweeters

Citations

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22 Dimensions

Readers on

mendeley
49 Mendeley
Title
National Registries of Rare Diseases in Europe: An Overview of the Current Situation and Experiences
Published in
Public Health Genomics, September 2014
DOI 10.1159/000365897
Pubmed ID
Authors

Domenica Taruscio, Luciano Vittozzi, Remy Choquet, Ketil Heimdal, Georgi Iskrov, Yllka Kodra, Paul Landais, Manuel Posada, Rumen Stefanov, Christiane Steinmueller, Elfriede Swinnen, Herman Van Oyen

Abstract

The European Union (EU) policy for healthcare requires the establishment of a system of European Reference Networks, union-wide information databases, and registries for rare diseases (RDs) based on shared criteria. In pursuing its goals, the 'Building Consensus and Synergies for the EU Registration of RD Patients in Europe' (EPIRARE) project convened a meeting with experts of the competent health authorities to discuss the role of national institutional RD patient registries in supporting EU patient registration and the room for international cooperation. With this aim, this paper comparatively analyses the current situation of national institutional RD registries in the EU. © 2014 S. Karger AG, Basel.

Twitter Demographics

The data shown below were collected from the profiles of 8 tweeters who shared this research output. Click here to find out more about how the information was compiled.

Mendeley readers

The data shown below were compiled from readership statistics for 49 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Spain 1 2%
Brazil 1 2%
Unknown 47 96%

Demographic breakdown

Readers by professional status Count As %
Student > Ph. D. Student 7 14%
Researcher 6 12%
Student > Postgraduate 6 12%
Professor 5 10%
Student > Bachelor 5 10%
Other 12 24%
Unknown 8 16%
Readers by discipline Count As %
Medicine and Dentistry 20 41%
Nursing and Health Professions 4 8%
Pharmacology, Toxicology and Pharmaceutical Science 3 6%
Biochemistry, Genetics and Molecular Biology 3 6%
Agricultural and Biological Sciences 2 4%
Other 10 20%
Unknown 7 14%

Attention Score in Context

This research output has an Altmetric Attention Score of 5. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 13 August 2015.
All research outputs
#3,347,838
of 13,626,890 outputs
Outputs from Public Health Genomics
#74
of 275 outputs
Outputs of similar age
#45,504
of 207,416 outputs
Outputs of similar age from Public Health Genomics
#1
of 1 outputs
Altmetric has tracked 13,626,890 research outputs across all sources so far. Compared to these this one has done well and is in the 75th percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 275 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 6.2. This one has gotten more attention than average, scoring higher than 73% of its peers.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 207,416 tracked outputs that were published within six weeks on either side of this one in any source. This one has done well, scoring higher than 77% of its contemporaries.
We're also able to compare this research output to 1 others from the same source and published within six weeks on either side of this one. This one has scored higher than all of them