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Clinical Practice Guidelines for Rare Diseases: The Orphanet Database

Overview of attention for article published in PLoS ONE, January 2017
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About this Attention Score

  • In the top 25% of all research outputs scored by Altmetric
  • High Attention Score compared to outputs of the same age (89th percentile)
  • High Attention Score compared to outputs of the same age and source (89th percentile)

Mentioned by

blogs
1 blog
twitter
14 tweeters
facebook
6 Facebook pages

Citations

dimensions_citation
60 Dimensions

Readers on

mendeley
91 Mendeley
citeulike
1 CiteULike
Title
Clinical Practice Guidelines for Rare Diseases: The Orphanet Database
Published in
PLoS ONE, January 2017
DOI 10.1371/journal.pone.0170365
Pubmed ID
Authors

Sonia Pavan, Kathrin Rommel, María Elena Mateo Marquina, Sophie Höhn, Valérie Lanneau, Ana Rath

Abstract

Clinical practice guidelines (CPGs) for rare diseases (RDs) are scarce, may be difficult to identify through Internet searches and may vary in quality depending on the source and methodology used. In order to contribute to the improvement of the diagnosis, treatment and care of patients, Orphanet (www.orpha.net) has set up a procedure for the selection, quality evaluation and dissemination of CPGs, with the aim to provide easy access to relevant, accurate and specific recommendations for the management of RDs. This article provides an analysis of selected CPGs by medical domain coverage, prevalence of diseases, languages and type of producer, and addresses the variability in CPG quality and availability. CPGs are identified via bibliographic databases, websites of research networks, expert centres or medical societies. They are assessed according to quality criteria derived from the Appraisal of Guidelines, REsearch and Evaluation (AGREE II) Instrument. Only open access CPGs and documents for which permission from the copyright holders has been obtained are disseminated on the Orphanet website. From January 2012 to July 2015, 277 CPGs were disseminated, representing coverage of 1,122 groups of diseases, diseases or subtypes in the Orphanet database. No language restriction is applied, and so far 10 languages are represented, with a predominance of CPGs in English, French and German (92% of all CPGs). A large proportion of diseases with identified CPGs belong to rare oncologic, neurologic, hematologic diseases or developmental anomalies. The Orphanet project on CPG collection, evaluation and dissemination is a continuous process, with regular addition of new guidelines, and updates. CPGs meeting the quality criteria are integrated to the Orphanet database of rare diseases, together with other types of textual information and the appropriate services for patients, researchers and healthcare professionals in 40 countries.

Twitter Demographics

The data shown below were collected from the profiles of 14 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 91 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
United Kingdom 1 1%
Unknown 90 99%

Demographic breakdown

Readers by professional status Count As %
Researcher 15 16%
Student > Ph. D. Student 13 14%
Student > Doctoral Student 10 11%
Student > Master 10 11%
Student > Bachelor 9 10%
Other 18 20%
Unknown 16 18%
Readers by discipline Count As %
Medicine and Dentistry 22 24%
Biochemistry, Genetics and Molecular Biology 19 21%
Agricultural and Biological Sciences 8 9%
Psychology 5 5%
Computer Science 5 5%
Other 12 13%
Unknown 20 22%

Attention Score in Context

This research output has an Altmetric Attention Score of 17. 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 02 March 2017.
All research outputs
#974,045
of 13,887,444 outputs
Outputs from PLoS ONE
#15,935
of 146,452 outputs
Outputs of similar age
#35,024
of 348,656 outputs
Outputs of similar age from PLoS ONE
#565
of 5,559 outputs
Altmetric has tracked 13,887,444 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 92nd percentile: it's in the top 10% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 146,452 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 12.3. This one has done well, scoring higher than 89% 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 348,656 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 89% of its contemporaries.
We're also able to compare this research output to 5,559 others from the same source and published within six weeks on either side of this one. This one has done well, scoring higher than 89% of its contemporaries.