The national autism database was created in January 2015. It embodies a unique multi-disciplinary collaboration where data is shared by scientists and clinicians from a variety of different fields including pediatrics, neurology, psychiatry, genetics, neuroscience, developmental psychology, molecular biology, and biomedical engineering.
Over the last three years we have been populating the database with a variety of data including birth, clinical, and demographic records, parental questionnaires, behavioral test scores (including cognitive and ADOS assessments), EEG recordings, eye tracking recordings, whole-exome DNA sequencing, ultrasound exams, and even MRI scans.
The availability of such a wide variety of multi-disciplinary data enables us to relate findings across scientific and medical fields. For example, we can check whether children with autism who have specific genetic abnormalities also display EEG abnormalities such as epileptiform activity.
Soroka is the only major medical center in the entire Negev (southern district of Israel). It services a population of close to one million people which is composed of ~60% Jews and ~40% Bedouin Arabs: two ethnic groups that differ in their genetic background and environmental exposures (i.e. different lifestyle and cultural norms). The population of the Negev is relatively static such that many multigenerational families receive medical services at Soroka throughout their entire lives.
Our database is an unbiased sample of this population.
The regional database contains information from over 1000 children with autism and their families, and is growing at a steady rate of ~15 new families per month. Over half of the children in our database were diagnosed before the age of 3, and more than 90% of the children receive their diagnosis before the age of 6. We find that the male to female ratio of children with autism in the Negev is similar to that reported world-wide (almost 4 to 1). A quarter of the families in our database are from the Bedouin population which is one of the most disadvantaged population in Israel. This population is characterized with a remarkably high rate of inter-family marriages (>60% are first-cousin marriages). This unique ethnic composition is very useful for examining how different genetic backgrounds and environmental exposures (which differ greatly across these ethnic groups) affect the risk for developing autism.