Setting global research priorities for developmental disabilities, including intellectual disabilities and autism

• Published in: Journal of intellectual disability research 2014-12, Vol.58 (12), p.1121-1130
• Main Authors: Tomlinson, M., Yasamy, M. T., Emerson, E., Officer, A., Richler, D., Saxena, S.
• Format: Article
• Language: English
• Subjects: Adolescents; Adult and adolescent clinical studies; Autism; Autistic Disorder - diagnosis; Autistic Disorder - economics; Autistic Disorder - therapy; Biological and medical sciences; Child clinical studies; Child Health; Children; Developing Countries - economics; Developmental Disabilities; Developmental Disabilities - diagnosis; Developmental Disabilities - economics; Developmental Disabilities - therapy; Developmental disorders; Global Approach; global research priority setting; Health Services Research - economics; Health Services Research - standards; Humans; Infantile autism; Intellectual deficiency; intellectual disabilities; Intellectual Disability; Intellectual Disability - diagnosis; Intellectual Disability - economics; Intellectual Disability - therapy; low and middle income countries; Medical sciences; Mental Retardation; Needs Assessment; Psychology. Psychoanalysis. Psychiatry; Psychopathology. Psychiatry; Research Needs; Resource Allocation
• ISSN: 0964-2633; 1365-2788
• DOI: 10.1111/jir.12106

Objectives The prevalence of intellectual disabilities (ID) has been estimated at 10.4/1000 worldwide with higher rates among children and adolescents in lower income countries. The objective of this paper is to address research priorities for development disabilities, notably ID and autism, at the global level and to propose the more rational use of scarce funds in addressing this under‐investigated area. Methods An expert group was identified and invited to systematically list and score research questions. They applied the priority setting methodology of the Child Health and Nutrition Research Initiative (CHNRI) to generate research questions and to evaluate them using a set of five criteria: answerability, feasibility, applicability and impact, support within the context and equity. Findings The results of this process clearly indicated that the important priorities for future research related to the need for effective and efficient approaches to early intervention, empowerment of families supporting a person with developmental disability and to address preventable causes of poor health in people with ID and autism. Conclusions For the public health and other systems to become more effective in delivering appropriate support to persons with developmental disabilities, greater (and more targeted) investment in research is required to produce evidence of what works consistent with international human rights standards.