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Health-related quality of life in mucopolysaccharidosis: looking beyond biomedical issues

Overview of attention for article published in Orphanet Journal of Rare Diseases, August 2016
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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 (79th percentile)
  • Good Attention Score compared to outputs of the same age and source (71st percentile)

Mentioned by

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1 policy source
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7 X users
facebook
1 Facebook page

Citations

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42 Dimensions

Readers on

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110 Mendeley
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Title
Health-related quality of life in mucopolysaccharidosis: looking beyond biomedical issues
Published in
Orphanet Journal of Rare Diseases, August 2016
DOI 10.1186/s13023-016-0503-2
Pubmed ID
Authors

Christian J. Hendriksz, Kenneth I. Berger, Christina Lampe, Susanne G. Kircher, Paul J. Orchard, Rebecca Southall, Sarah Long, Stephen Sande, Jeffrey I. Gold

Abstract

The mucopolysaccharidoses (MPS) comprise a heterogeneous family of rare, genetic lysosomal storage disorders that result in severe morbidity and reduced life expectancy. Emerging treatments for several of these disorders have triggered the search for clinically relevant biomarkers and clinical markers associated with treatment efficacy in populations and individuals. However, biomedical measures do not tell the whole story when characterizing a complex chronic disorder such as MPS. Health-related quality of life (HRQoL) tools that utilize patient reported outcomes to address patient parameters such as symptoms (pain, fatigue, psychological health), functioning (activity and limitations), or quality of life, have been used to supplement traditional biomedical endpoints. Many of these HRQoL tools have demonstrated that quality of life is negatively impacted in patients with MPS. There is both the opportunity and need to formally standardize and validate HRQoL tools for the different MPS disorders.

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 110 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 110 100%

Demographic breakdown

Readers by professional status Count As %
Student > Master 14 13%
Other 12 11%
Student > Bachelor 12 11%
Student > Doctoral Student 11 10%
Researcher 9 8%
Other 19 17%
Unknown 33 30%
Readers by discipline Count As %
Medicine and Dentistry 23 21%
Psychology 10 9%
Pharmacology, Toxicology and Pharmaceutical Science 9 8%
Nursing and Health Professions 7 6%
Biochemistry, Genetics and Molecular Biology 6 5%
Other 19 17%
Unknown 36 33%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 8. 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 01 April 2021.
All research outputs
#4,403,629
of 24,164,942 outputs
Outputs from Orphanet Journal of Rare Diseases
#608
of 2,840 outputs
Outputs of similar age
#71,313
of 344,434 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#10
of 32 outputs
Altmetric has tracked 24,164,942 research outputs across all sources so far. Compared to these this one has done well and is in the 81st percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 2,840 research outputs from this source. They typically receive more attention than average, with a mean Attention Score of 7.9. This one has done well, scoring higher than 78% 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 344,434 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 79% of its contemporaries.
We're also able to compare this research output to 32 others from the same source and published within six weeks on either side of this one. This one has gotten more attention than average, scoring higher than 71% of its contemporaries.