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Guidelines for incorporating scientific knowledge and practice on rare diseases into higher education: neuronal ceroid lipofuscinoses as a model disorder

Overview of attention for article published in Biochimica et Biophysica Acta (BBA), June 2015
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Title
Guidelines for incorporating scientific knowledge and practice on rare diseases into higher education: neuronal ceroid lipofuscinoses as a model disorder
Published in
Biochimica et Biophysica Acta (BBA), June 2015
DOI 10.1016/j.bbadis.2015.06.018
Pubmed ID
Authors

Inés Adriana Cismondi, Romina Kohan, Heather Adams, Mike Bond, Rachel Brown, Jonathan D. Cooper, Perla K. de Hidalgo, Sophia-Martha Kleine Holthaus, Sara E. Mole, Julia Mugnaini, Ana María Oller de Ramirez, Favio Pesaola, Gisela Rautenberg, Frances M. Platt, Inés Noher de Halac

Abstract

This article addresses the educational issues associated with Rare Diseases (RD) and in particular the Neuronal Ceroid Lipofuscinoses (NCLs, or CLN diseases) in the curricula of Health Sciences and Professional´s Training Programs. Our aim is to develop guidelines for improving scientific knowledge and practice in higher education and continuous learning programs. Rare diseases (RD) are collectively common in the general population with 1 in 17 people affected by a RD in their lifetime. Inherited defects in genes involved in metabolism are the commonest group of RD with over 8000 known inborn errors of metabolism. The majority of these diseases are neurodegenerative including the NCLs. Any professional training program on NCL must take into account the medical, social and economic burdens related to RDs. To address these challenges and find solutions to them it is necessary that individuals in the government and administrative authorities, academia, teaching hospitals and medical schools, the pharmaceutical industry, investment community and patient advocacy groups all work together to achieve these goals. The logistical issues of including RD lectures in university curricula and in continuing medical education should reflect its complex nature. To evaluate the state of education in the RD field, a summary should be periodically up dated in order to assess the progress achieved in each country that signed up to the international conventions addressing RD issues in society. It is anticipated that auditing current practice will lead to higher standards and provide a framework for those educators involved in establishing RD teaching programs world-wide.

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The data shown below were collected from the profiles of 2 X users who shared this research output. Click here to find out more about how the information was compiled.
Mendeley readers

Mendeley readers

The data shown below were compiled from readership statistics for 86 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Argentina 2 2%
Denmark 1 1%
Spain 1 1%
Unknown 82 95%

Demographic breakdown

Readers by professional status Count As %
Other 12 14%
Student > Master 12 14%
Researcher 8 9%
Student > Ph. D. Student 7 8%
Student > Bachelor 6 7%
Other 24 28%
Unknown 17 20%
Readers by discipline Count As %
Medicine and Dentistry 12 14%
Nursing and Health Professions 8 9%
Agricultural and Biological Sciences 8 9%
Biochemistry, Genetics and Molecular Biology 7 8%
Social Sciences 7 8%
Other 24 28%
Unknown 20 23%
Attention Score in Context

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 29 June 2015.
All research outputs
#16,048,009
of 25,374,917 outputs
Outputs from Biochimica et Biophysica Acta (BBA)
#16,523
of 19,218 outputs
Outputs of similar age
#146,655
of 278,443 outputs
Outputs of similar age from Biochimica et Biophysica Acta (BBA)
#126
of 240 outputs
Altmetric has tracked 25,374,917 research outputs across all sources so far. This one is in the 34th percentile – i.e., 34% of other outputs scored the same or lower than it.
So far Altmetric has tracked 19,218 research outputs from this source. They receive a mean Attention Score of 4.4. This one is in the 13th percentile – i.e., 13% 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 278,443 tracked outputs that were published within six weeks on either side of this one in any source. This one is in the 44th percentile – i.e., 44% of its contemporaries scored the same or lower than it.
We're also able to compare this research output to 240 others from the same source and published within six weeks on either side of this one. This one is in the 42nd percentile – i.e., 42% of its contemporaries scored the same or lower than it.