Setting global research priorities for developmental disabilities, including intellectual disabilities and autism.
Global experts say fund early intervention and family empowerment first—use this list when writing grants or allocating research budgets.
01Research in Context
What this study did
A team of global experts asked one question: where should research money go first?
They used a formal vote called CHNRI. Experts scored ideas for impact, cost, and fairness.
The focus was kids and adults with autism, intellectual disability, or other delays.
What they found
The top three winners were clear: early intervention, family empowerment, and stopping preventable health problems.
These beat drug studies, high-tech tools, and late-life care in the final scores.
How this fits with other research
Lee et al. (2024) shows the need. They tracked real kids and found poorer areas give fewer education plans even when disability is equal. This proves the 2014 call for equity was spot-on.
Sabatello et al. (2025) shows the next step. They urge researchers to include adults with ID in precision-medicine trials. This answers the 2014 plea to tackle preventable health causes across the lifespan.
Shawler et al. (2021) gives a tool. Their Goal Attainment Scaling framework lets you measure the individualized outcomes that early-intervention grants must now prove.
Why it matters
Use the list when you write grants, ask for internal funds, or sit on review boards. If your project targets early intervention, family training, or health equity, you can say it aligns with global expert consensus. That adds weight to your pitch and may boost funding odds.
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02At a glance
03Original abstract
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.
Journal of intellectual disability research : JIDR, 2014 · doi:10.1111/jir.12106