Building a national research agenda

CAIRN was founded in 2000 with the goal of building a national research agenda on early identification and treatment in autism. It has held four national conferences focused on this outcome, each one involving researchers, parents, policy makers and multidisciplinary service providers from across the country.

The core model for the process was a variation on the iterative loop, in which a research question is formulated, the research is carried out, its findings disseminated, and the question refined based on feedback.

The first three conferences saw much discussion and debate among the various stakeholders as to what the research priorities should be. There was a great deal of information sharing, relationship building and learning from others but no concrete action toward initiating new research responsive to the priorities and needs of the stakeholders as expressed by the group.

The CAIRN Steering Committee, in designing the 2004 conference, addressed the need to move past simply defining a research agenda, and on to initiating research proposals reflecting the needs articulated by the different stakeholder groups. The Committee’s intent was to have a working conference focused on early intervention research from a practical standpoint with concrete outcomes.

Moving the research forward

The pivotal accomplishment of the 2004 CAIRN conference was the formulation of specific research proposals by leading Canadian researchers in early intervention based on input not just from the research community but from parents, service providers and policy makers – the constituencies with the strongest interests in early intervention research. The topics they chose to investigate illustrate the scope and breadth of research concerns around early intervention issues in autism and the decisiveness with which the participants moved to prioritize them.

In an exciting development that demonstrates the powerful change that can take place when people pool their knowledge, experience and wisdom for a common cause, one of the high-priority research studies proposed at the 2004 CAIRN conference is about to become a reality.

A research team led by Dr. Peter Szatmari, an expert in the study of autism and pervasive developmental disorders (PDD), has been awarded more than $2.1 million in funding from the Canadian Institutes of Health Research (CIHR) to study 400 autistic pre-school children (aged 2-4 years) over a period of five years. This is the largest amount of money ever awarded in Canada for a single autism study.

In this groundbreaking study, the largest of its kind anywhere in the world, researchers will examine the factors that influence social competence, behaviour, communication, adaptive functioning and family well-being. Their goal is to identify new and better pathways that will improve the outcome for children with autism.

Click here for more information on the study.