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The partnership of patient advocacy groups and clinical investigators in the rare diseases clinical research network

Overview of attention for article published in Orphanet Journal of Rare Diseases, May 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)
  • High Attention Score compared to outputs of the same age and source (93rd percentile)

Mentioned by

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13 tweeters
facebook
1 Facebook page

Citations

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33 Dimensions

Readers on

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66 Mendeley
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Title
The partnership of patient advocacy groups and clinical investigators in the rare diseases clinical research network
Published in
Orphanet Journal of Rare Diseases, May 2016
DOI 10.1186/s13023-016-0445-8
Pubmed ID
Authors

Peter A. Merkel, Michele Manion, Rashmi Gopal-Srivastava, Stephen Groft, H. A. Jinnah, David Robertson, Jeffrey P. Krischer

Abstract

Among the unique features of the Rare Diseases Clinical Research Network (RDCRN) Program is the requirement for each Consortium to include patient advocacy groups (PAGs) as research partners. This development has transformed the work of the RDCRN and is a model for collaborative research. This article outlines the roles patients and PAGs play in the RDCRN and reports on the PAGs' impact on the Network's success. Principal Investigators from the 17 RDCRN Consortia and 28 representatives from 76 PAGs affiliated with these Consortia were contacted by email to provide feedback via an online RDCRN survey. Impact was measured in the key areas of 1) Research logistics; 2) Outreach and communication; and 3) Funding and in-kind support. Rating choices were: 1-very negative, 2-somewhat negative, 3-no impact, 4-somewhat positive, and 5-very positive. Twenty-seven of the PAGs (96 %) disseminate information about the RDCRN within the patient community. The Consortium Principal Investigators also reported high levels of PAG involvement. Sixteen (94 %) Consortium Principal Investigators and 25 PAGs (89 %) reported PAGs participation in protocol review, study design, Consortium conference calls, attending Consortium meetings, or helping with patient recruitment. PAGs are actively involved in shaping Consortia's research agendas, help ensure the feasibility and success of research protocols by assisting with study design and patient recruitment, and support training programs. This extensive PAG-Investigator partnership in the RDCRN has had a strongly positive impact on the success of the Network.

Twitter Demographics

The data shown below were collected from the profiles of 13 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 66 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Ghana 1 2%
Unknown 65 98%

Demographic breakdown

Readers by professional status Count As %
Student > Master 18 27%
Student > Ph. D. Student 8 12%
Researcher 8 12%
Student > Postgraduate 6 9%
Student > Bachelor 4 6%
Other 11 17%
Unknown 11 17%
Readers by discipline Count As %
Medicine and Dentistry 18 27%
Nursing and Health Professions 7 11%
Social Sciences 6 9%
Biochemistry, Genetics and Molecular Biology 6 9%
Psychology 4 6%
Other 10 15%
Unknown 15 23%

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 17 September 2020.
All research outputs
#3,264,065
of 18,905,383 outputs
Outputs from Orphanet Journal of Rare Diseases
#404
of 2,025 outputs
Outputs of similar age
#56,678
of 273,535 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#3
of 29 outputs
Altmetric has tracked 18,905,383 research outputs across all sources so far. Compared to these this one has done well and is in the 82nd percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 2,025 research outputs from this source. They typically receive more attention than average, with a mean Attention Score of 7.5. This one has done well, scoring higher than 79% 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 273,535 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 29 others from the same source and published within six weeks on either side of this one. This one has done particularly well, scoring higher than 93% of its contemporaries.