Needles in haystacks: the challenges of rare diseases

Jinnah, Hyder A.

doi:10.1111/j.1469-8749.2010.03791.x

Cited by 2 publications

(1 citation statement)

References 5 publications

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“…After reading the abstracts it was found that, even though one of the terms in the educational sphere appeared in the title, the content of the paper was medical. Some were related to the training of medical and healthcare staff in the field of RDs (Jinnah, 2011;Van Karnebeek et al, 2012). Others had to do with university studies and knowledge, as in the case -for example -of the paper by Cismondi et al (2015), which addressed the educational issues associated with particular rare diseases in the curricula of Health Sciences and Professional Training Programs.…”

Section: Resultsmentioning

confidence: 99%

A systematic review of research into rare diseases in the educational sphere

Darretxe¹,

Gaintza²,

Monzon-Gonzalez³

2017

Educ. Res. Rev.

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Rare diseases (RDs) represent a wide, varied group of illnesses characterised by their low prevalence among the population. Moreover, they can appear at any time of life, including in infancy. For this reason, the aim of this article was to review and analyse research in the field of education to find out what kind of educational response is offered by schools to pupils with RDs. The following databases were used to find the pertinent bibliography: Web of Science, Scopus, Education Database (Proquest) and Eric. After retrieving the publications included in this study, each paper was reviewed and analysed on the basis of what journal they were published in and their abstracts. Out of the 53 studies included, only six bore any relation to the school context. The results showed that while there are scientific papers on RDs, most of them are restricted to the medical sphere. It was therefore concluded that further research is needed in the field of education to advance in the schooling of pupils with RDs.

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Section: Resultsmentioning

confidence: 99%