Setting Global Research Priorities for Developmental Disabilities, Including Intellectual Disabilities and Autism

Tomlinson et al. (2014) full text summary PDF

For which topic were research priorities identified?

developmental disabilities

In which location was the research priority setting conducted?

international

Why was it conducted at all?

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.

What was the objective?

to address research priorities for developmental disabilities, notably intellectual disabilities and autism, at the global level and to propose the more rational use of scarce funds in addressing this under-investigated area

What was the outcome?

a list of 5 research areas

How long did the research prioritization take?

No information provided.

Which methods were used to identify research priorities?

CHNRI approach

How were the priorities for research identified exactly?

Step 1: defining context. Step 2: defining prioritization criteria: five criteria identified. Step 3: collecting research questions: identifying experts and asking them to generate research questions which they believed were priorities, 266 research questions generated. Step 4: data processing: collating questions into 69 questions. Step 5: scoring: via survey, questions grouped into five research areas, experts were asked to score each of the 69 questions

Which stakeholders took part?

Academic researchers, health or allied healthcare professional, users, non-governmental organization, parents or immediate family members. 49 participants.

How were stakeholders recruited?

Library searches and snowball sampling was used to identify experts known for their work on development disabilities and representatives from civil society and service user organizations.

Were stakeholders actively involved or did they just participate?

Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.