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Clinical trial network for the promotion of clinical research for rare diseases in Japan: muscular dystrophy clinical trial network

Overview of attention for article published in BMC Health Services Research, July 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 (71st percentile)
  • Above-average Attention Score compared to outputs of the same age and source (59th percentile)

Mentioned by

twitter
6 tweeters
facebook
1 Facebook page

Citations

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2 Dimensions

Readers on

mendeley
20 Mendeley
Title
Clinical trial network for the promotion of clinical research for rare diseases in Japan: muscular dystrophy clinical trial network
Published in
BMC Health Services Research, July 2016
DOI 10.1186/s12913-016-1477-4
Pubmed ID
Authors

Reiko Shimizu, Katsuhisa Ogata, Akemi Tamaura, En Kimura, Maki Ohata, Eri Takeshita, Harumasa Nakamura, Shin’ichi Takeda, Hirofumi Komaki

Abstract

Duchenne muscular dystrophy (DMD) is the most commonly inherited neuromuscular disease. Therapeutic agents for the treatment of rare disease, namely "orphan drugs", have recently drawn the attention of researchers and pharmaceutical companies. To ensure the successful conduction of clinical trials to evaluate novel treatments for patients with rare diseases, an appropriate infrastructure is needed. One of the effective solutions for the lack of infrastructure is to establish a network of rare diseases. To accomplish the conduction of clinical trials in Japan, the Muscular dystrophy clinical trial network (MDCTN) was established by the clinical research group for muscular dystrophy, including the National Center of Neurology and Psychiatry, as well as national and university hospitals, all which have a long-standing history of research cooperation. Thirty-one medical institutions (17 national hospital organizations, 10 university hospitals, 1 national center, 2 public hospitals, and 1 private hospital) belong to this network and collaborate to facilitate clinical trials. The Care and Treatment Site Registry (CTSR) calculates and reports the proportion of patients with neuromuscular diseases in the cooperating sites. In total, there are 5,589 patients with neuromuscular diseases in Japan and the proportion of patients with each disease is as follows: DMD, 29 %; myotonic dystrophy type 1, 23 %; limb girdle muscular dystrophy, 11 %; Becker muscular dystrophy, 10 %. We work jointly to share updated health care information and standardized evaluations of clinical outcomes as well. The collaboration with the patient registry (CTSR), allows the MDCTN to recruit DMD participants with specific mutations and conditions, in a remarkably short period of time. Counting with a network that operates at a national level is important to address the corresponding national issues. Thus, our network will be able to contribute with international research activity, which can lead to an improvement of neuromuscular disease treatment in Japan.

Twitter Demographics

The data shown below were collected from the profiles of 6 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 20 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 20 100%

Demographic breakdown

Readers by professional status Count As %
Student > Master 5 25%
Student > Bachelor 2 10%
Student > Doctoral Student 2 10%
Student > Ph. D. Student 2 10%
Unspecified 2 10%
Other 7 35%
Readers by discipline Count As %
Medicine and Dentistry 7 35%
Agricultural and Biological Sciences 3 15%
Biochemistry, Genetics and Molecular Biology 3 15%
Unspecified 2 10%
Psychology 1 5%
Other 4 20%

Attention Score in Context

This research output has an Altmetric Attention Score of 4. 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 November 2016.
All research outputs
#1,939,596
of 8,647,833 outputs
Outputs from BMC Health Services Research
#1,016
of 3,199 outputs
Outputs of similar age
#74,034
of 262,429 outputs
Outputs of similar age from BMC Health Services Research
#66
of 161 outputs
Altmetric has tracked 8,647,833 research outputs across all sources so far. Compared to these this one has done well and is in the 76th percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 3,199 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 5.6. This one has gotten more attention than average, scoring higher than 67% 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 262,429 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 71% of its contemporaries.
We're also able to compare this research output to 161 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 59% of its contemporaries.