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Methodological challenges in monitoring new treatments for rare diseases: lessons from the cryopyrin-associated periodic syndrome registry

Overview of attention for article published in Orphanet Journal of Rare Diseases, September 2013
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Mentioned by

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2 tweeters

Citations

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6 Dimensions

Readers on

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25 Mendeley
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Title
Methodological challenges in monitoring new treatments for rare diseases: lessons from the cryopyrin-associated periodic syndrome registry
Published in
Orphanet Journal of Rare Diseases, September 2013
DOI 10.1186/1750-1172-8-139
Pubmed ID
Abstract

The Cryopyrin-Associated Periodic Syndromes (CAPS) are a group of rare hereditary autoinflammatory diseases and encompass Familial Cold Autoinflammatory Syndrome (FCAS), Muckle-Wells Syndrome (MWS), and Neonatal Onset Multisystem Inflammatory Disease (NOMID). Canakinumab is a monoclonal antibody directed against IL-1 beta and approved for CAPS patients but requires post-approval monitoring due to low and short exposures during the licensing process. Creative approaches to observational methodology are needed, harnessing novel registry strategies to ensure Health Care Provider reporting and patient monitoring.

Twitter Demographics

The data shown below were collected from the profiles of 2 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 25 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Switzerland 1 4%
United Kingdom 1 4%
Italy 1 4%
Brazil 1 4%
Unknown 21 84%

Demographic breakdown

Readers by professional status Count As %
Researcher 7 28%
Student > Bachelor 6 24%
Student > Master 3 12%
Professor 2 8%
Student > Ph. D. Student 2 8%
Other 5 20%
Readers by discipline Count As %
Medicine and Dentistry 17 68%
Agricultural and Biological Sciences 2 8%
Unspecified 1 4%
Mathematics 1 4%
Biochemistry, Genetics and Molecular Biology 1 4%
Other 3 12%

Attention Score in Context

This research output has an Altmetric Attention Score of 1. 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 17 September 2013.
All research outputs
#2,922,759
of 4,507,280 outputs
Outputs from Orphanet Journal of Rare Diseases
#595
of 775 outputs
Outputs of similar age
#62,206
of 94,700 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#49
of 58 outputs
Altmetric has tracked 4,507,280 research outputs across all sources so far. This one is in the 31st percentile – i.e., 31% of other outputs scored the same or lower than it.
So far Altmetric has tracked 775 research outputs from this source. They receive a mean Attention Score of 3.5. This one is in the 16th percentile – i.e., 16% of its peers scored the same or lower than it.
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 94,700 tracked outputs that were published within six weeks on either side of this one in any source. This one is in the 31st percentile – i.e., 31% of its contemporaries scored the same or lower than it.
We're also able to compare this research output to 58 others from the same source and published within six weeks on either side of this one. This one is in the 12th percentile – i.e., 12% of its contemporaries scored the same or lower than it.