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

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.

ISCoS-WHO collaboration. International Perspectives of Spinal Cord Injury (IPSCI) report.

OBJECTIVE: The objective of this study was to describe the projects, the International Spinal Cord Society (ISCoS) has in cooperation with the World Health Organization (WHO) for the benefit of individuals with spinal cord injury (SCI) worldwide. SETTING: International METHODS: Collaboration between ISCoS and WHO can be divided into (A) building capacity for better SCI education and prevention programs; (B) improving classification systems for use of data in SCI research, the International Classification of External Cause of Injury (ICECI), the International Classification of Diseases (ICD) and the International Classification of Functioning, Disability and Health (ICF); and (C) improving the evidence base for SCI through the report, International Perspectives on Spinal Cord Injury (IPSCI). The objectives of the IPSCI report are first to summarize information on SCI, in particular the science and epidemiology, the services, interventions and policies that are relevant and 'the lived experience' of persons with SCI across the full spectrum of life and throughout the world; second, to document all aspects of the science and experience of SCI to identify gaps between what exists and what is required; and third to make recommendations based on this evidence, with a clear perception of feasible goals and targets, that are consistent with the aspirations and goals of inclusion and full participation as expressed in the UN Convention of the Rights of Persons with Disabilities. FUTURE COOPERATION: ISCoS and WHO will continue to join forces in areas where they can make the greatest difference, especially in prevention and educational issues worldwide.