Revolutionizing research

Researchers and clinicians from 14 Boston-area institutions have joined the Autism Consortium to accelerate research to understand the Autism Genome through gene-sequencing and analysis of the hundreds of patients and family members who are an integral part of this research enterprise.

The families who founded the Autism Consortium did so in the belief that we need to change the way science is done. Collaboration must become the norm rather than the exception if solutions to the diagnosis and treatment of complex diseases are to be accelerated.

According to one Autism Consortium researcher, it is not uncommon for big problems to be studied piecemeal, each scientist contributing what he or she knows best. That may no longer be a viable model and research on autism spectrum disorders is an ideal case in point. Unraveling this complex disease requires researchers who understand and are skilled at genome sequencing, including those with expertise in bioinformatics who can write computer algorithms specific to gene-finding for ASDs. It also demands talented clinicians who see patients regularly and can make on-the-spot connections between symptoms and relevant scientific data. It requires families (patients, parents and siblings) who are willing to be active participants in research studies and clinical trials and who, by virtue of their day-to-day experience, can contribute their own observations for new approaches to research. In short, it takes a village, not an individual, to crack this disorder that affects one in every 150 individuals and their families: people who need answers now, not a decade from now.