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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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  • Good Attention Score compared to outputs of the same age (72nd percentile)
  • High Attention Score compared to outputs of the same age and source (80th percentile)

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Citations

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32 Dimensions

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62 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.

X Demographics

X Demographics

The data shown below were collected from the profiles of 7 X users who shared this research output. Click here to find out more about how the information was compiled.
Mendeley readers

Mendeley readers

The data shown below were compiled from readership statistics for 62 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 60 97%

Demographic breakdown

Readers by professional status Count As %
Researcher 10 16%
Student > Ph. D. Student 8 13%
Student > Postgraduate 6 10%
Student > Bachelor 5 8%
Professor 5 8%
Other 13 21%
Unknown 15 24%
Readers by discipline Count As %
Medicine and Dentistry 25 40%
Pharmacology, Toxicology and Pharmaceutical Science 4 6%
Biochemistry, Genetics and Molecular Biology 3 5%
Nursing and Health Professions 3 5%
Agricultural and Biological Sciences 2 3%
Other 11 18%
Unknown 14 23%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 4. 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
#6,407,558
of 22,764,165 outputs
Outputs from Public Health Genomics
#121
of 381 outputs
Outputs of similar age
#64,047
of 238,632 outputs
Outputs of similar age from Public Health Genomics
#1
of 5 outputs
Altmetric has tracked 22,764,165 research outputs across all sources so far. This one has received more attention than most of these and is in the 70th percentile.
So far Altmetric has tracked 381 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 6.1. This one has gotten more attention than average, scoring higher than 67% 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 238,632 tracked outputs that were published within six weeks on either side of this one in any source. This one has gotten more attention than average, scoring higher than 72% of its contemporaries.
We're also able to compare this research output to 5 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