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The Negev Hospital-University-Based (HUB) Database of Autism
In the last decade, research into the etiologies of autism is shifting from small-scale studies often focusing on one or several biological/clinical measures in a small sample, to more extensive studies that examine multiple types of data in larger cohorts. Nevertheless, many of these studies have relatively limited pre-diagnostic data, and usually do not collect sufficient follow-up data that enables connecting the etiological dots from risk factors through biological mechanisms to precise phenotypic manifestations.
Objectives:
We have established a hospital-university-based (HUB) database of autism at the Soroka University Medical Center (SUMC) and Ben-Gurion University (BGU) in the Negev. This database contains a wide variety of unique clinical and behavioral information regarding each participating child and his/her family members.
Methods:
Children who are referred to SUMC with suspected social communication difficulties go through a rigorous clinical assessment that includes a comprehensive intake interview regarding the clinical and sociodemographic background of the diagnosed child, cognitive evaluation by either the Bayley-III or the WPPSI-III test and assessment by ADOS-2. Autism diagnosis is determined by a pediatric psychiatrist or a pediatric neurologist according to DSM-V criteria. Parents or the legal guardian of all referred children are asked to enroll in the study and sign a consent form. Children with a positive diagnosis of autism return to the clinic for follow-up visits every 6 to 12 months until the age six. During these visits, their diagnosis is re-evaluated and additional data are collected through other ongoing studies (e.g. genetics, sleep and sensory questionnaires, overnight EEG exams, and eye-tracking experiments). All these data are organized and stored in a designated secured computerized database.
Results:
During the first eighteen months of the study, 296 children were referred to SUMC with suspected social communication difficulties. Autism diagnosis was confirmed in 188 of these children (63.5%), and 133 of these (70.4%) were successfully recruited to our study. Interestingly, the rate of positive autism diagnoses was significantly higher among Jewish children than among Bedouin children (68.3% vs 51.3%; P = 0.0077). Significant ethnic differences (P<0.05) were also seen in mother’s age at birth (Bedouin mothers were 5-years younger), ADOS module, and cognitive test utilization (suggesting more language impairments among Bedouins at time of diagnosis), and cognitive level (Bedouin had lower cognitive scores). Other unique characteristics of our cohort include: complete birth records for >90% of the children; a high frequency of consanguineous families (especially of Bedouin origin); and multiple follow-up meetings with participating families that facilitate recruitment to additional studies.
Conclusions:
The Negev hospital-university-based (HUB) database of autism contains a wide variety of demographic, clinical and behavioral measures that are collected both retrospectively and prospectively from a population with unique ethnic composition. Thus, it comprises a remarkably rich resource to study different aspects of autism.