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An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry

Overview of attention for article published in Orphanet Journal of Rare Diseases, November 2016
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About this Attention Score

  • In the top 25% of all research outputs scored by Altmetric
  • High Attention Score compared to outputs of the same age (91st percentile)
  • High Attention Score compared to outputs of the same age and source (93rd percentile)

Mentioned by

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26 tweeters
facebook
6 Facebook pages
wikipedia
1 Wikipedia page

Citations

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16 Dimensions

Readers on

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70 Mendeley
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Title
An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry
Published in
Orphanet Journal of Rare Diseases, November 2016
DOI 10.1186/s13023-016-0537-5
Pubmed ID
Authors

Len Woodward, Sally Johnson, Johan Vande Walle, Joran Beck, Christoph Gasteyger, Christoph Licht, Gema Ariceta, Woodward, Len, Johnson, Sally, Walle, Johan Vande, Beck, Joran, Gasteyger, Christoph, Licht, Christoph, Ariceta, Gema, , , Vande Walle, Johan, on behalf of the aHUS Registry SAB

Abstract

Patients are becoming increasingly involved in research which can promote innovation through novel ideas, support patient-centred actions, and facilitate drug development. For rare diseases, registries that collect data from patients can increase knowledge of the disease's natural history, evaluate clinical therapies, monitor drug safety, and measure quality of care. The active participation of patients is expected to optimise rare-disease management and improve patient outcomes. However, few reports address the type and frequency of interactions involving patients, and what research input patient groups have. Here, we describe a collaboration between an international group of patient organisations advocating for patients with atypical haemolytic uraemic syndrome (aHUS), the aHUS Alliance, and an international aHUS patient registry (ClinicalTrials.gov NCT01522183). The aHUS Registry Scientific Advisory Board (SAB) invited the aHUS Alliance to submit research ideas important to patients with aHUS. This resulted in 24 research suggestions from patients and patient organisations being presented to the SAB. The proposals were classified under seven categories, the most popular of which were understanding factors that cause disease manifestations and learning more about the clinical and psychological/social impact of living with the disease. Subsequently, aHUS Alliance members voted for up to five research priorities. The top priority was: "What are the outcomes of a transplant without eculizumab and what non-kidney damage is likely in patients with aHUS?". This led directly to the initiation of an ongoing analysis of the data collected in the Registry on patients with kidney transplants. This collaboration resulted in several topics proposed by the aHUS Alliance being selected as priority activities for the aHUS Registry, with one new analysis already underway. A clear pathway was established for engagement between a patient advocacy group and an international research network. This should ensure the development of a long-term partnership which clearly benefits both groups.

Twitter Demographics

The data shown below were collected from the profiles of 26 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 70 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 70 100%

Demographic breakdown

Readers by professional status Count As %
Student > Master 14 20%
Researcher 13 19%
Student > Ph. D. Student 8 11%
Other 6 9%
Student > Doctoral Student 5 7%
Other 15 21%
Unknown 9 13%
Readers by discipline Count As %
Medicine and Dentistry 21 30%
Nursing and Health Professions 12 17%
Social Sciences 5 7%
Pharmacology, Toxicology and Pharmaceutical Science 5 7%
Agricultural and Biological Sciences 4 6%
Other 11 16%
Unknown 12 17%

Attention Score in Context

This research output has an Altmetric Attention Score of 21. 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 23 September 2020.
All research outputs
#1,217,976
of 18,942,198 outputs
Outputs from Orphanet Journal of Rare Diseases
#111
of 2,029 outputs
Outputs of similar age
#34,915
of 406,507 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#7
of 105 outputs
Altmetric has tracked 18,942,198 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 93rd percentile: it's in the top 10% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 2,029 research outputs from this source. They typically receive more attention than average, with a mean Attention Score of 7.5. This one has done particularly well, scoring higher than 94% 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 406,507 tracked outputs that were published within six weeks on either side of this one in any source. This one has done particularly well, scoring higher than 91% of its contemporaries.
We're also able to compare this research output to 105 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.