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The context for the thematic grouping of rare diseases to facilitate the establishment of European Reference Networks

Overview of attention for article published in Orphanet Journal of Rare Diseases, February 2016
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  • In the top 25% of all research outputs scored by Altmetric
  • High Attention Score compared to outputs of the same age (80th percentile)
  • Good Attention Score compared to outputs of the same age and source (75th percentile)

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12 X users
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1 Facebook page

Citations

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34 Dimensions

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52 Mendeley
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1 CiteULike
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Title
The context for the thematic grouping of rare diseases to facilitate the establishment of European Reference Networks
Published in
Orphanet Journal of Rare Diseases, February 2016
DOI 10.1186/s13023-016-0398-y
Pubmed ID
Authors

Teresinha Evangelista, Victoria Hedley, Antonio Atalaia, Matt Johnson, Stephen Lynn, Yann Le Cam, Kate Bushby

Abstract

In the past few years there has been a political imperative driving the creation of European Reference Networks as these are considered a promising way to achieve equity in access to the most up to date medical care across Europe. The right to equity in the access to care was established by the directive of the European Parliament and of the Council on the application of patients' rights in cross-border healthcare. The particular situation for Rare Diseases whereby sharing of expertise can be regarded as especially valuable, as well as the work that is already in place in the networking of Rare Diseases experts means that Rare Diseases are considered excellent models for the development of European Reference Networks. To be effective, a Rare Disease network should be based on the common effort of different stakeholders and be built on what is present in the community. European Reference Networks are an excellent model to overcome some of the specificities of rare diseases: scarcity of patients, resources and expertise. European Reference Networks with broad scope will allow the rare disease community the possibility of reaching a larger number of patients and more diversified rare diseases. The practical value of grouping rare diseases in broad networks is well demonstrated in different grouping systems present in Europe (EURORDIS grouping of diseases, "Les filières de santé maladies rares", Orphanet classification and the UK Research Model). In this paper the authors, partners of EUCERD Joint Action, address some of the questions that surround the establishment of European Reference Networks. We will focus on how Rare Diseases could be efficiently grouped in order to constitute European Reference Networks and how they might be structured to allow each and every disease to benefit from networking.

X Demographics

X Demographics

The data shown below were collected from the profiles of 12 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 52 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
United Kingdom 1 2%
Spain 1 2%
Brazil 1 2%
Unknown 49 94%

Demographic breakdown

Readers by professional status Count As %
Researcher 7 13%
Student > Ph. D. Student 7 13%
Student > Master 5 10%
Professor 4 8%
Student > Bachelor 4 8%
Other 13 25%
Unknown 12 23%
Readers by discipline Count As %
Medicine and Dentistry 18 35%
Nursing and Health Professions 6 12%
Biochemistry, Genetics and Molecular Biology 4 8%
Neuroscience 3 6%
Unspecified 2 4%
Other 6 12%
Unknown 13 25%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 9. 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 12 April 2016.
All research outputs
#4,279,612
of 25,374,647 outputs
Outputs from Orphanet Journal of Rare Diseases
#596
of 3,105 outputs
Outputs of similar age
#62,081
of 313,159 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#8
of 33 outputs
Altmetric has tracked 25,374,647 research outputs across all sources so far. Compared to these this one has done well and is in the 83rd percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 3,105 research outputs from this source. They typically receive more attention than average, with a mean Attention Score of 8.2. This one has done well, scoring higher than 80% 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 313,159 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 80% of its contemporaries.
We're also able to compare this research output to 33 others from the same source and published within six weeks on either side of this one. This one has done well, scoring higher than 75% of its contemporaries.