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Current models of care for disorders of sex development – results from an International survey of specialist centres

Overview of attention for article published in Orphanet Journal of Rare Diseases, November 2016
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  • Above-average Attention Score compared to outputs of the same age and source (56th percentile)

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Title
Current models of care for disorders of sex development – results from an International survey of specialist centres
Published in
Orphanet Journal of Rare Diseases, November 2016
DOI 10.1186/s13023-016-0534-8
Pubmed ID
Authors

Andreas Kyriakou, Arianne Dessens, Jillian Bryce, Violeta Iotova, Anders Juul, Maciej Krawczynski, Agneta Nordenskjöld, Marta Rozas, Caroline Sanders, Olaf Hiort, S. Faisal Ahmed

Abstract

To explore the current models of practice in centres delivering specialist care for children with disorders of sex development (DSD), an international survey of 124 clinicians, identified through DSDnet and the I-DSD Registry, was performed in the last quarter of 2014. A total of 78 (63 %) clinicians, in 75 centres, from 38 countries responded to the survey. A formal national network for managing DSD was reported to exist in 12 (32 %) countries. The paediatric specialists routinely involved in the initial evaluation of a newborn included: endocrinologist (99 %), surgeon/urologist (95 %), radiologist (93 %), neonatologist (91 %), clinical geneticist (81 %) and clinical psychologist (69 %). A team consisting of paediatric specialists in endocrinology, surgery/urology, clinical psychology, and nursing was only possible in 31 (41 %) centres. Of the 75 centres, 26 (35 %) kept only a local DSD registry and 40 (53 %) shared their data in a multicentre DSD registry. Attendance in local, national and international DSD-related educational programs was reported by 69, 78 and 84 % clinicians, respectively. Participation in audits/quality improvement exercises in DSD care was reported by 14 (19 %) centres. In addition to complex biochemistry and molecular genetic investigations, 40 clinicians (51 %) also had access to next generation sequencing. A genetic test was reported to be more preferable than biochemical tests for diagnosing 5-alpha reductase deficiency and 17-beta hydroxysteroid dehydrogenase 3 deficiency by 50 and 55 % clinicians, respectively. DSD centres report a high level of interaction at an international level, have access to specialist staff and are increasingly relying on molecular genetics for routine diagnostics. The quality of care provided by these centres locally requires further exploration.

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Mendeley readers

Mendeley readers

The data shown below were compiled from readership statistics for 96 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 96 100%

Demographic breakdown

Readers by professional status Count As %
Researcher 16 17%
Student > Master 15 16%
Student > Bachelor 10 10%
Student > Ph. D. Student 7 7%
Student > Doctoral Student 6 6%
Other 14 15%
Unknown 28 29%
Readers by discipline Count As %
Medicine and Dentistry 21 22%
Nursing and Health Professions 11 11%
Biochemistry, Genetics and Molecular Biology 7 7%
Agricultural and Biological Sciences 6 6%
Psychology 6 6%
Other 12 13%
Unknown 33 34%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 5. 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 09 January 2023.
All research outputs
#6,540,589
of 24,040,389 outputs
Outputs from Orphanet Journal of Rare Diseases
#864
of 2,812 outputs
Outputs of similar age
#113,968
of 422,169 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#17
of 37 outputs
Altmetric has tracked 24,040,389 research outputs across all sources so far. This one has received more attention than most of these and is in the 72nd percentile.
So far Altmetric has tracked 2,812 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 69% 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 422,169 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 72% of its contemporaries.
We're also able to compare this research output to 37 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 56% of its contemporaries.