Ilan Dinstein, associate professor, neuroscientist and researcher at Israel’s Ben Gurion University of the Negev, says the autism research centre recently launched by the BGU Autism Forum, a consortium of researchers and clinicians from the Be’er Sheva area, finds itself in a uniquely privileged position.
This is due to the research centre’s access to centralized data, something others of its kind don’t tend to have, Dinstein explained, as in most cases patients’ medical records are dispersed across medical institutions.
Because it’s housed near BGU in the Soroka Medical Center, the Autism Forum’s centre has already recruited 220 families who have a child diagnosed with autism at Soroka, and entered their information into a database.
Because Soroka – it serves about one million patients annually and sees roughly 250 new cases of autism per year – is the only medical centre in the Negev, more than 90 per cent of the children diagnosed as autistic at Soroka were also born there.
This means the autism centre has access to the comprehensive clinical records of many patients, including, in a number of cases, information about neo-natal care.
“Part of building this database is collecting information on all the clinical records for the children up until their diagnosis of autism, as well as clinical data about their parents. So we know things like the parents’ history of abortions, fertility treatment…if the child was in a neo-natal care unit, etc. We get to know this right away, as opposed to other research efforts, which rely on parental reports [of medical histories],” Dinstein said.
Dinstein was in Toronto last month for a visit organized by BGU’s Canadian fundraising arm, the Canadian Associates of Ben-Gurion University of the Negev.
While here, he met with several possible donors and with Dr. Steven Scherer, director of The Centre for Applied Genomics that operates out of the Hospital for Sick Children.
Dinstein said he and Scherer discussed the possibility of a collaborative project wherein the Centre for Applied Genomics would one day do genetic analysis of the participants in Dinstein’s database.
The BGU Autism Forum is collecting DNA samples from the autistic children and their parents, as well as measures of the children’s brain activity during sleep and records of their eye movement, because, as Dinstein explained, “Kids with autism tend to prefer different types of stimuli and to avoid looking at faces, looking instead at objects or toys.”
Further, his team is examining whether patients exposed to what are understood as risk factors of autism, such as parental age or fetal distress, display different brain development from autistic children not exposed to these factors.
The ultimate goal of the study is to determine effective ways of sub-dividing autism, Dinstein explained, noting that this could, in turn, lead to the development of new, targeted treatments.
“Everyone agrees that autism…is probably several different disorders that are likely to require different treatments, but today we don’t know how to…split this large group into meaningful sub-groups,” he said.
Because children with autism commonly experience additional symptoms, such as sleeping or digestive problems, a broad study that examines the combinations of patients’ symptoms and medical histories will hopefully enable Dinstein’s team to successfully divide participants into sub-groups.
“Our initial focus is on causes and diagnostic tools. If we decide in six months, say, that EEG [electroencephalogram] measures [used to detect abnormalities related to the brain’s electrical activity] are useful for separating autism into two sub-groups, that would immediately translate into doing clinical trials [to test specific treatment options],” Dinstein said.
For example, if a child shows brain activity that’s “epileptic-like,” Dinstein said, they would likely recruit him or her for a clinical trial for drugs used as anti-epileptic treatment.
The team is now at a stage where they’re following up with children they first saw a year ago.
“We’ll be asking parents what kind of therapies, behavioural interventions and educational situations their child was involved in over the past year, and then we can sub-categorize kids according to who did what and who is doing best,” he said.