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An assessment of the quality of the I-DSD and the I-CAH registries - international registries for rare conditions affecting sex development

Overview of attention for article published in Orphanet Journal of Rare Diseases, March 2017
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  • Above-average Attention Score compared to outputs of the same age (55th percentile)
  • Average Attention Score compared to outputs of the same age and source

Mentioned by

twitter
3 tweeters
facebook
2 Facebook pages

Citations

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17 Dimensions

Readers on

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25 Mendeley
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Title
An assessment of the quality of the I-DSD and the I-CAH registries - international registries for rare conditions affecting sex development
Published in
Orphanet Journal of Rare Diseases, March 2017
DOI 10.1186/s13023-017-0603-7
Pubmed ID
Authors

M. Kourime, J. Bryce, J. Jiang, R. Nixon, M. Rodie, S.F. Ahmed

Abstract

With the proliferation of rare disease registries, there is a need for registries to undergo an assessment of their quality against agreed standards to ensure their long-term sustainability and acceptability.This study was performed to evaluate the I-DSD and I-CAH Registries and identify their strengths and weaknesses. The design and operational aspects of the registries were evaluated against published quality indicators. Additional criteria included the level of activity, international acceptability of the registries and their use for research. The design of the I-DSD and I-CAH Registries provides them with the ability to perform multiple studies and meet the standards for data elements, data sources and eligibility criteria. The registries follow the standards for data security, governance, ethical and legal issues, sustainability and communication of activities. The data have a high degree of validity, consistency and accuracy and the completeness is maximal for specific conditions such as androgen insensitivity syndrome and congenital adrenal hyperplasia. In terms of research output, the external validity is strong but the wide variety of cases needs further review. The internal validity of data was condition specific and highest for conditions such as congenital adrenal hyperplasia. The shift of the registry from a European registry to an international registry and the creation of a discrete but linked CAH registry increased the number of users and stakeholders as well as the international acceptability of both registries. The I-DSD and I-CAH registries comply with the standards set by expert organisations. Recent modifications in their operation have allowed the registries to increase their user acceptability.

Twitter Demographics

The data shown below were collected from the profiles of 3 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 25 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 25 100%

Demographic breakdown

Readers by professional status Count As %
Student > Bachelor 6 24%
Student > Doctoral Student 3 12%
Researcher 2 8%
Student > Ph. D. Student 2 8%
Professor 1 4%
Other 2 8%
Unknown 9 36%
Readers by discipline Count As %
Medicine and Dentistry 6 24%
Pharmacology, Toxicology and Pharmaceutical Science 2 8%
Agricultural and Biological Sciences 2 8%
Business, Management and Accounting 2 8%
Nursing and Health Professions 1 4%
Other 4 16%
Unknown 8 32%

Attention Score in Context

This research output has an Altmetric Attention Score of 2. 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 14 June 2017.
All research outputs
#6,113,614
of 11,364,832 outputs
Outputs from Orphanet Journal of Rare Diseases
#619
of 1,237 outputs
Outputs of similar age
#113,996
of 263,820 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#26
of 50 outputs
Altmetric has tracked 11,364,832 research outputs across all sources so far. This one is in the 44th percentile – i.e., 44% of other outputs scored the same or lower than it.
So far Altmetric has tracked 1,237 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 6.8. This one is in the 46th percentile – i.e., 46% of its peers scored the same or lower than it.
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 263,820 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 55% of its contemporaries.
We're also able to compare this research output to 50 others from the same source and published within six weeks on either side of this one. This one is in the 46th percentile – i.e., 46% of its contemporaries scored the same or lower than it.