Oregon Health & Science University will take part in the largest autism research initiative ever conducted in the United States.

The Simons Foundation Autism Research Initiative aims to create a national online autism registry by collecting medical and genetic data on 50,000 autistic people.

The goal is to accelerate research by creating the largest pool of genetic data and potential research subjects ever assembled for autism research, said Dr. Eric Fombonne, a professor of psychiatry with the OHSU School of Medicine.

OHSU is one of only 21 clinical sites in the country chosen to participate in the project, Fombonne said.

The OHSU group is tasked with recruiting 3,000 families over the next three years from across the Pacific Northwest and Alaska, Fombonne said.

People participating in the study will be asked to provide a detailed medical history. The Simons Foundation will send saliva kits, so the autistic person and their biological mother and father can undergo a full genome sequencing.

Once the full registry is completed, researchers can delve into the medical information and genetic data, both to perform new analysis and to gather subjects for future clinical trials, Fombonne said.

“There will be a multiplicity of research projects, and families can opt in or opt out depending on each study,” he said. “The participants, I hope, will become part of a culture of research.”

Autism has proven difficult to research because patients tend to be very different from one another, Fombonne said. Only by gathering a large number of autistic people together can researchers begin to look for genetic and medical similarities that can be studied.

The effort at OHSU will be led by Fombonne and Brian O’Roak, an assistant professor of molecular and medical genetics.

Fombonne, an internationally known researcher in the epidemiology of autism, developed clinical and research programs in France, the United Kingdom and Canada before coming to OHSU. He has published more than 300 articles in peer-reviewed journals and is on the editorial board of several journals in the field of autism and child psychiatry.

O’Roak has participated in groundbreaking research into the genetic basis of neuropsychiatric and neurodevelopmental disorders. O’Roak and his colleagues researchers pioneered a family-based, genome-sequencing model that has begun unraveling the genetic mystery of autism.

The researchers have set up a site to help possible participants learn more about or sign up for the study.

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Dennis Thompson
Contributing Reporter
Portland Business Journal
Apr. 25, 2016