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Fostering collaborative research for rare genetic disease: the example of niemann-pick type C disease

Overview of attention for article published in Orphanet Journal of Rare Diseases, December 2016
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  • Good Attention Score compared to outputs of the same age (74th percentile)
  • Above-average Attention Score compared to outputs of the same age and source (60th percentile)

Mentioned by

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4 X users
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1 Wikipedia page

Citations

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15 Dimensions

Readers on

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48 Mendeley
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Title
Fostering collaborative research for rare genetic disease: the example of niemann-pick type C disease
Published in
Orphanet Journal of Rare Diseases, December 2016
DOI 10.1186/s13023-016-0540-x
Pubmed ID
Authors

Steven U. Walkley, Cristin D. Davidson, Jonathan Jacoby, Philip D. Marella, Elizabeth A. Ottinger, Christopher P. Austin, Forbes D. Porter, Charles H. Vite, Daniel S. Ory

Abstract

Rare disease represents one of the most significant issues facing the medical community and health care providers worldwide, yet the majority of these disorders never emerge from their obscurity, drawing little attention from the medical community or the pharmaceutical industry. The challenge therefore is how best to mobilize rare disease stakeholders to enhance basic, translational and clinical research to advance understanding of pathogenesis and accelerate therapy development. Here we describe a rare, fatal brain disorder known as Niemann-Pick type C (NPC) and an innovative research collaborative known as Support of Accelerated Research for NPC (SOAR-NPC) which illustrates one pathway through which knowledge of a rare disease and its possible treatments are being successfully advanced. Use of the "SOAR" mechanism, we believe, offers a blueprint for similar advancement for many other rare disorders.

X Demographics

X Demographics

The data shown below were collected from the profiles of 4 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 48 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 48 100%

Demographic breakdown

Readers by professional status Count As %
Student > Master 8 17%
Researcher 7 15%
Student > Ph. D. Student 4 8%
Student > Bachelor 4 8%
Other 3 6%
Other 8 17%
Unknown 14 29%
Readers by discipline Count As %
Medicine and Dentistry 6 13%
Nursing and Health Professions 5 10%
Biochemistry, Genetics and Molecular Biology 4 8%
Pharmacology, Toxicology and Pharmaceutical Science 4 8%
Agricultural and Biological Sciences 4 8%
Other 9 19%
Unknown 16 33%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 6. 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 03 November 2023.
All research outputs
#6,283,885
of 24,736,359 outputs
Outputs from Orphanet Journal of Rare Diseases
#822
of 2,965 outputs
Outputs of similar age
#106,648
of 426,849 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#17
of 40 outputs
Altmetric has tracked 24,736,359 research outputs across all sources so far. This one has received more attention than most of these and is in the 74th percentile.
So far Altmetric has tracked 2,965 research outputs from this source. They typically receive more attention than average, with a mean Attention Score of 8.0. This one has gotten more attention than average, scoring higher than 72% 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 426,849 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 74% of its contemporaries.
We're also able to compare this research output to 40 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 60% of its contemporaries.