Research Grants to Develop Tools to Improve ASD Identification: A Comprehensive Review of Projects Funded in the US from 2008 to 2015

Background: Concerns about ASD’s prevalence and delays in diagnosis mobilized $2.5 billion in research funding in the United States between 2008 and 2015. Yet recent reports indicate persistent and significant gaps in timely and accurate identification. We recently reviewed all projects funded through the National Institutes of Health from 2008 to 2013 and focused on ASD identification. We found only 9 projects (totaling $10 million, or 1% of total NIH funding for ASD research) focused on improving ASD identification among community providers, and few Principal Investigators (PIs) with extensive community experience. How could research lead to widespread improvements in identification? Have funders prioritized the development of clinical tools for identification, and have the resulting projects achieved their stated goals?

Objectives: To review the level of funding and progress evident with respect to clinical research designed to improve tools for ASD identification across the US between 2008 and 2015, and any possible relationship to the training and experience of the PIs. This review utilizes a new research roadmap (submitted separately to IMFAR) for improved ASD identification that tracks progress from basic research to population outcomes, with Clinical Research as one distinct stage.

Methods: We downloaded information on all research projects addressing ASD identification between 2008 and 2015 in the Autism Research Database (ARD). We identified projects focused on Clinical Research (i.e., seeking to develop, validate, improve, or extend tools or protocols for ASD screening or diagnosis) by reviewing principal aims of all projects not assigned in the ARD to categories clearly associated with basic research. We are also classifying the principal outcomes of the resulting publications on the research roadmap, and reviewing the resumes of PIs for evidence of clinical training and experience.

Results: Of 399 research projects focused on ASD identification funded for $278 million between 2008 and 2015, the majority (220) were assigned to categories in the ARD associated with Basic Research. Project summaries were available for 156 of the remaining 179 projects. A detailed review of the principal aims revealed 32 projects potentially involving Clinical Research, totaling $34 million (or 12% of all funds allocated to improve ASD identification). Allocations over time supported the research roadmap, with increasing emphasis on more advanced clinical research in later years. Analyses of the associated publications, training, and background of the 28 PIs are underway. Preliminary results suggest that most PIs have little or no experience supervising the delivery of clinical services outside of specialized university or hospital settings.

Conclusions: Little research funded between 2008 and 2015 to improve ASD identification appears to have focused on improving tools for ASD identification, and additional analyses underway will clarify whether the projects funded actually achieved their stated aims. The relative lack of focus on clinical research, compounded by the limited experience of project PIs, may begin to explain how gaps in identification have persisted despite significant investments in ASD research. Progress captured by the research roadmap suggests, however, an increasing focus on clinical research in future years.