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Which neurodevelopmental disorders get researched and why?
1Developmental Neuropsychology, University of Oxford, Oxford, United Kingdom. dorothy.bishop@psy.ox.ac.uk
Insights
Research on neurodevelopmental disorders varies significantly. While severity and prevalence explain some differences, rare conditions receive more attention, and autism and ADHD show exceptional research growth.
Area of Science:
- Neuroscience
- Developmental Psychology
- Genetics
Background:
- Significant disparities exist in research focus across various neurodevelopmental disorders.
- Understanding the drivers of research allocation is crucial for addressing knowledge gaps.
Purpose of the Study:
- To investigate the factors influencing research volume for 35 different neurodevelopmental disorders.
- To identify patterns in research activity relative to disorder prevalence and severity.
Main Methods:
- Bibliographic searches were performed for publications between 1985 and 2009.
- A publication index was calculated for 35 neurodevelopmental disorders, comparing publication counts to prevalence rates.
Main Results:
- Rare neurodevelopmental disorders generally had a higher publication index than common ones.
- This trend was partially attributed to the increased severity often associated with rarer conditions.
Conclusions:
- Research activity correlates with disorder severity and prevalence, but exceptions exist.
- Conditions researched by a single discipline with limited resources show low research rates and funding.
- Autism and Attention Deficit Hyperactivity Disorder (ADHD) exhibited particularly steep increases in research growth, not explained by severity alone.
Aim:
There are substantial differences in the amount of research concerned with different disorders. This paper considers why.
Methods:
Bibliographic searches were conducted to identify publications (1985-2009) concerned with 35 neurodevelopmental disorders: Developmental dyslexia, Developmental dyscalculia, Developmental coordination disorder, Speech sound disorder, Specific language impairment, Attention deficit hyperactivity disorder, Autistic spectrum disorder, Tourette syndrome, Intellectual disability, Angelman syndrome, Cerebral palsy, Cornelia de Lange syndrome, Cri du chat syndrome, Down syndrome, Duchenne muscular dystrophy, Fetal alcohol syndrome, Fragile X syndrome, Galactosaemia, Klinefelter syndrome, Lesch-Nyhan syndrome, Lowe syndrome, Marfan syndrome, Neurofibromatosis type 1, Noonan syndrome, Phenylketonuria, Prader-Willi syndrome, Rett syndrome, Rubinstein-Taybi syndrome, Trisomy 18, Tuberous sclerosis, Turner syndrome, Velocardiofacial syndrome, Williams syndrome, XXX and XYY. A publication index reflecting N publications relative to prevalence was derived.
Results:
The publication index was higher for rare than common conditions. However, this was partly explained by the tendency for rare disorders to be more severe.
Interpretation:
Although research activity is predictable from severity and prevalence, there are exceptions. Low rates of research, and relatively low levels of NIH funding, characterise conditions that are the domain of a single discipline with limited research resources. Growth in research is not explained by severity, and was exceptionally steep for autism and ADHD.
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