Elucidating the heterogeneous etiologies of autism will require investment in comprehensive longitudinal data acquisition from large community based cohorts. With this in mind, we have established a hospital-university-based (HUB) database of autism which incorporates prospective and retrospective data from a large and ethnically diverse population. The collected data includes social-demographic characteristics, standardized behavioral testing, detailed clinical history from electronic patient records, genetic samples, and various neurological measures. We describe the initial cohort characteristics following the first 18 months of data collection (188 children with autism). We believe that the Negev HUB autism database offers a unique and valuable resource for studying the heterogeneity of autism etiologies across different ethnic populations.
This is a preview of subscription content, access via your institution.
Buy single article
Instant access to the full article PDF.
Tax calculation will be finalised during checkout.
Subscribe to journal
Immediate online access to all issues from 2019. Subscription will auto renew annually.
Tax calculation will be finalised during checkout.
American Psychiatric Association. (2000). Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-IV). Arlington: American Psychiatric Publishing.
American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-V). Arlington: American Psychiatric Publishing.
Amir, H., Weintraub, A., Aricha-Tamir, B., Apel-Sarid, L., Holcberg, G., & Sheiner, E. (2009). A piece in the puzzle of intrauterine fetal death: Pathological findings in placentas from term and preterm intrauterine fetal death pregnancies. The Journal of Maternal-Fetal and Neonatal Medicine: The official Journal of the European Association of Perinatal Medicine, the Federation of Asia and Oceania Perinatal Societies, the International Society of Perinatal Obstet, 22, 759–764. doi:10.3109/14767050902929396.
Antshel, K. M., Zhang-James, Y., & Faraone, S. V. (2013). The comorbidity of ADHD and autism spectrum disorder. Expert Review of Neurotherapeutics, 13, 1117–1128. doi:10.1586/14737175.2013.840417.
Bayley, N. (2006). Bayley scales of infant and toddler development–third edition. Journal of Psychoeducational Assessment, 25, 180–190. doi:10.1177/0734282906297199.
Bilenko, N., Fraser D., Vardy H., & Belmaker I. (2014). Impact of multiple micronutrient supplementation (“sprinkles”) on iron deficiency anemia in Bedouin Arab and Jewish infants. The Israel Medical Association Journal: IMAJ 16, 434–438.
Buxbaum, J. D., et al. (2014). The autism simplex collection: An international, expertly phenotyped autism sample for genetic and phenotypic analyses. Molecular Autism: The International Journal of Research and Practice, 5, 34. doi:10.1186/2040-2392-5-34.
CDC. (2014). Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2010. MMWR Surveillance Summaries 63(Suppl 2), 1–21.
Chawarska, K., & Shic, F. (2009). Looking but not seeing: Atypical visual scanning and recognition of faces in 2 and 4-year-old children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 39, 1663–1672. doi:10.1007/s10803-009-0803-7.
Courchesne, E., Campbell, K., & Solso, S. (2011). Brain growth across the life span in autism: Age-specific changes in anatomical pathology. Brain Research, 1380, 138–145. doi:10.1016/j.brainres.2010.09.101.
Croen, L., et al. (2012). CB7-03: A diverse autism registry for etiologic and effectiveness studies: Prevalence and demographic characteristics. Clinical Medicine and Research, 10, 183. doi:10.3121/cmr.2012.1100.cb7-03.
De Rubeis, S., et al. (2014). Synaptic, transcriptional and chromatin genes disrupted in autism. Nature, 515, 209–215. doi:10.1038/nature13772.
Dealberto, M. J. (2013). Are different subtypes of autism spectrum disorders associated with different factors? Acta Psychiatrica Scandinavica, 128, 1–2. doi:10.1111/acps.12063.
Di Martino, A., et al. (2014). The autism brain imaging data exchange: Towards a large-scale evaluation of the intrinsic brain architecture in autism. Molecular Psychiatry, 19, 659–667. doi:10.1038/mp.2013.78.
Dinstein, I., Haar, S., Atsmon, S., & Schtaerman, H. (2017). No evidence of early head circumference enlargements in children later diagnosed with autism in Israel. Molecular Autism: The International Journal of Research and Practice, 8, 15. doi:10.1186/s13229-017-0129-9.
Dunn, W., & Westman, K. (1997). The Sensory Profile: The performance of a national sample of children without disabilities. American Journal of Occupational Therapy, 51, 25–34.
Fischbach, G. D., & Lord, C. (2010). The Simons Simplex Collection: A resource for identification of autism genetic risk factors. Neuron, 68, 192–195. doi:10.1016/j.neuron.2010.10.006.
Gabis, L. V., & Pomeroy J. (2014). An etiologic classification of autism spectrum disorders. The Israel Medical Association Journal: IMAJ 16, 295–298.
Georgiades, S., et al. (2012). Investigating phenotypic heterogeneity in children with autism spectrum disorder: A factor mixture modeling approach. Journal of Child Psychology and Psychiatry, and Allied Disciplines. doi:10.1111/j.1469-7610.2012.02588.x.
Geschwind, D. H., et al. (2001). The autism genetic resource exchange: A resource for the study of autism and related neuropsychiatric conditions. American Journal of Human Genetics, 69, 463–466. doi:10.1086/321292.
Gotsman, I., et al. (2015). Ethnic disparity in the clinical characteristics of patients with heart failure. European Journal of Heart Failure, 17, 801–808. doi:10.1002/ejhf.285.
Harel, T., Goldberg, Y., Shalev, S. A., Chervinski, I., Ofir, R., & Birk, O. S. (2004). Limb-girdle muscular dystrophy 2I: Phenotypic variability within a large consanguineous Bedouin family associated with a novel FKRP mutation. European Journal of Human Genetics: EJHG, 12, 38–43. doi:10.1038/sj.ejhg.5201087.
Iossifov, I., et al. (2012). De novo gene disruptions in children on the autistic spectrum. Neuron, 74, 285–299. doi:10.1016/j.neuron.2012.04.009.
Israel, T.C.B.o.S.o. (2006–2016). Live birth statistics. Statistical abstract of Israel.
Israel, T.C.B.o.S.o. (2016). Total population. Statistical abstract of Israel.
Jones, W., & Klin, A. (2013). Attention to eyes is present but in decline in 2-6-month-old infants later diagnosed with autism. Nature, 504, 427–431. doi:10.1038/nature12715.
Kessous, R., Shoham-Vardi, I., Pariente, G., Holcberg, G., & Sheiner, E. (2013a). An association between preterm delivery and long-term maternal cardiovascular morbidity. American Journal of Obstetrics and Gynecology, 209(368), e1–e8. doi:10.1016/j.ajog.2013.05.041.
Kessous, R., Shoham-Vardi, I., Pariente, G., Sherf, M., & Sheiner, E. (2013b). An association between gestational diabetes mellitus and long-term maternal cardiovascular morbidity. Heart, 99, 1118–1121. doi:10.1136/heartjnl-2013-303945.
Kim, S. H., Macari, S., Koller, J., & Chawarska, K. (2015). Examining the phenotypic heterogeneity of early autism spectrum disorder: Subtypes and short-term outcomes. Journal of Child Psychology and Psychiatry, and Allied Disciplines. doi:10.1111/jcpp.12448.
Kohane, I. S., et al. (2012). The co-morbidity burden of children and young adults with autism spectrum disorders. PLoS ONE, 7, e33224. doi:10.1371/journal.pone.0033224.
Kong, S. W., et al. (2013). Peripheral blood gene expression signature differentiates children with autism from unaffected siblings. Neurogenetics. doi:10.1007/s10048-013-0363-z.
Kridin, K., Zelber-Sagi, S., Khamaisi, M., Cohen, A. D., & Bergman, R. (2016). Remarkable differences in the epidemiology of pemphigus among two ethnic populations in the same geographic region. Journal of the American Academy of Dermatology. doi:10.1016/j.jaad.2016.06.055.
Krumm, N., et al. (2015). Excess of rare, inherited truncating mutations in autism. Nature Genetics, 47, 582–588. doi:10.1038/ng.3303.
Lai, M. C., Lombardo, M. V., Chakrabarti, B., & Baron-Cohen, S. (2013). Subgrouping the autism “spectrum”: Reflections on DSM-5. PLoS Biology, 11, e1001544. doi:10.1371/journal.pbio.1001544.
Landau, D., Mishori-Dery, A., Hershkovitz, R., Narkis, G., Elbedour, K., & Carmi, R. (2003). A new autosomal recessive congenital contractural syndrome in an Israeli Bedouin kindred. American Journal of Medical Genetics Part A, 117 A, 37–40. doi:10.1002/ajmg.a.10894.
Lane, A. E., Molloy, C. A., & Bishop, S. L. (2014). Classification of children with autism spectrum disorder by sensory subtype: A case for sensory-based phenotypes. Autism Research. doi:10.1002/aur.1368.
Lazarev, I., Flaschner, M., Geffen, D. B., & Ariad, S. (2014). Breast cancer in Bedouin-Arab patients in southern Israel: Epidemiologic and biologic features in comparison with Jewish patients. Asian Pacific Journal of Cancer Prevention: APJCP 15, 7533–7537.
Lebel, D. E., Sergienko, R., Wiznitzer, A., Velan, G. J., & Sheiner, E. (2012). Mode of delivery and other pregnancy outcomes of patients with documented scoliosis. The journal of Maternal-Fetal and Neonatal Medicine: The Official Journal of the European Association of Perinatal Medicine, the Federation of Asia and Oceania Perinatal Societies, the International Society of Perinatal Obstet, 25, 639–641. doi:10.3109/14767058.2011.598587.
Lenroot, R. K., & Yeung, P. K. (2013). Heterogeneity within autism spectrum disorders: What have we learned from neuroimaging studies? Frontiers in Human Neuroscience, 7, 733. doi:10.3389/fnhum.2013.00733.
Leshem, E., Givon-Lavi, N., Vinje, J., Gregoricus, N., Parashar, U., & Dagan, R. (2015). Differences in norovirus-associated hospital visits between Jewish and Bedouin children in Southern Israel. The Pediatric Infectious Disease Journal, 34, 1036–1038. doi:10.1097/inf.0000000000000786.
Levy, S. E., Mandell, D. S., & Schultz, R. T. (2009). Autism. The Lancet, 374, 1627–1638. doi:10.1016/s0140-6736(09)61376-3.
Lord, C., et al. (2000). The autism diagnostic observation schedule-generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30, 205–223.
Lord, C., & Jones, R. M. (2012). Annual research review: Re-thinking the classification of autism spectrum disorders. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 53, 490–509. doi:10.1111/j.1469-7610.2012.02547.x.
Loth, E., et al. (2016). Identification and validation of biomarkers for autism spectrum disorders. Nature Reviews Drug Discovery 15, 70–3 doi:10.1038/nrd.2015.7.
Loth, E., Spooren, W., & Murphy, D. G. (2014). New treatment targets for autism spectrum disorders: EU-AIMS. The Lancet Psychiatry, 1, 413–415. doi:10.1016/s2215-0366(14)00004-2.
Ministry of Justice, I. (1981). Protection of Privacy Law, 5741.
Na’amnih, W., et al. (2014). Prevalence of consanguineous marriages and associated factors among Israeli Bedouins. Journal of Community Genetics, 5, 395–398. doi:10.1007/s12687-014-0188-y.
Nazeer, A., & Ghaziuddin, M. (2012). Autism spectrum disorders: Clinical features and diagnosis. Pediatric Clinics of North America, 59(19–25), ix. doi:10.1016/j.pcl.2011.10.007.
O’Roak, B. J., et al. (2011). Exome sequencing in sporadic autism spectrum disorders identifies severe de novo mutations. Nature Genetics, 43, 585–589. doi:10.1038/ng.835.
Owens, J. A., Spirito, A., & McGuinn, M. (2000). The Children’s Sleep Habits Questionnaire (CSHQ): Psychometric properties of a survey instrument for school-aged children. Sleep, 23, 1043–1051.
Pariente, G., Sheiner, E., Kessous, R., Michael, S., & Shoham-Vardi, I. (2013). Association between delivery of a small-for-gestational-age neonate and long-term maternal cardiovascular morbidity. International Journal of Gynaecology and Obstetrics: The Official Organ of the International Federation of Gynaecology and Obstetrics, 123, 68–71. doi:10.1016/j.ijgo.2013.06.008.
Payakachat, N., Tilford, J. M., & Ungar, W. J. (2015). National Database for Autism Research (NDAR): Big data opportunities for health services research and health technology assessment. PharmacoEconomics. doi:10.1007/s40273-015-0331-6.
Ramsey, J. M., et al. (2013). Identification of an age-dependent biomarker signature in children and adolescents with autism spectrum disorders. Molecular Autism: The International Journal of Research and Practice, 4, 27. doi:10.1186/2040-2392-4-27.
Ratzon, R., Sheiner, E., & Shoham-Vardi, I. (2011). The role of prenatal care in recurrent preterm birth. European Journal of Obstetrics, Gynecology, and Reproductive Biology, 154, 40–44. doi:10.1016/j.ejogrb.2010.08.011.
Raz, R., Weisskopf, M. G., Davidovitch, M., Pinto, O., & Levine, H. (2014). Differences in autism spectrum disorders incidence by sub-populations in Israel 1992–2009: A total population study. Journal of Autism and Developmental Disorders. doi:10.1007/s10803-014-2262-z.
Sanders, S. J., et al. (2012). De novo mutations revealed by whole-exome sequencing are strongly associated with autism. Nature, 485, 237–241. doi:10.1038/nature10945.
Shatzky, S., et al. (2000). Congenital insensitivity to pain with anhidrosis (CIPA) in Israeli-Bedouins: Genetic heterogeneity, novel mutations in the TRKA/NGF receptor gene, clinical findings, and results of nerve conduction studies. American Journal of Medical Genetics, 92, 353–360.
Shental, O., Friger, M., & Sheiner, E. (2010). Ethnic differences in the monthly variation of preeclampsia among Bedouin and Jewish parturients in the Negev. Hypertension in Pregnancy, 29, 342–349. doi:10.3109/10641950902968692.
Shimony, A., Afawi, Z., Asher, T., Mahajnah, M., & Shorer, Z. (2009). Epidemiological characteristics of febrile seizures–comparing between Bedouin and Jews in the southern part of Israel. Seizure: The Journal of the British Epilepsy Association, 18, 26–29. doi:10.1016/j.seizure.2008.05.011.
Siegel, M., et al. (2015). The autism inpatient collection: Methods and preliminary sample description. Molecular Autism: The International Journal of Research and Practice, 6, 61. doi:10.1186/s13229-015-0054-8.
Smirnov, M., Lazarev, I., Perry, Z. H., Ariad, S., & Kirshtein, B. (2016). Colorectal cancer in southern Israel: Comparison between Bedouin Arab and Jewish patients. International Journal of Surgery, 33, 109–116. doi:10.1016/j.ijsu.2016.07.069.
Stoltenberg, C., et al. (2010). The Autism Birth Cohort: A paradigm for gene-environment-timing research. Molecular Psychiatry, 15, 676–680. doi:10.1038/mp.2009.143.
Treister-Goltzman, Y., Peleg, R., & Biderman, A. (2015). Anemia among Muslim Bedouin and Jewish women of childbearing age in Southern Israel. Annals of Hematology, 94, 1777–1784. doi:10.1007/s00277-015-2459-z.
Volkmar, F. R., Reichow, B., & McPartland, J. (2012). Classification of autism and related conditions: Progress, challenges, and opportunities. Dialogues in Clinical Neuroscience, 14, 229–237.
Wechsler, D. (1989). Wechsler preschool and primary scale of intelligence—revised. San Antonio, TX: The Psychological Corporation.
Wolff, J. J., et al. (2012). Differences in white matter fiber tract development present from 6 to 24 months in infants with autism. The American Journal of Psychiatry, 169, 589–600. doi:10.1176/appi.ajp.2011.11091447.
Zwaigenbaum, L., et al. (2014). Early head growth in infants at risk of autism: A baby siblings research consortium study. Journal of the American Academy of Child and Adolescent Psychiatry, 53, 1053–1062. doi:10.1016/j.jaac.2014.07.007.
This study was supported by a generous anonymous donation, a donation from Ann Berger, in memory of her father Daniel Falkner, the Israeli Science Foundation (ISF Grant 527/15), and by the Joyce and Irving Goldman Family foundation for research excellence. In addition, we want to thank to Mr. Suleiman Abu-Hani for his assistance in the Bedouin Families recruitment, and to all the families of children with autism who gave their consent to participate in this study.
Conflict of interest
Gal Meiri, Nadav Davidovitch, and Idan Menashe has received a research grant from the Israeli Science Foundation (Grant Number 527/15). Ilan Dinstein, Analya Michaelowski, Hagit Flusser, Michal Ilan, Michal Faroy, Asif Bar-Sinai, Liora Manelis, Dana Stolowicz, Lili Lea Yosef, Hava Golan, and Shosh Arbelle declare that they have no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
Gal Meiri and Ilan Dinstein have contributed equally.
Electronic supplementary material
Below is the link to the electronic supplementary material.
About this article
Cite this article
Meiri, G., Dinstein, I., Michaelowski, A. et al. Brief Report: The Negev Hospital-University-Based (HUB) Autism Database. J Autism Dev Disord 47, 2918–2926 (2017). https://doi.org/10.1007/s10803-017-3207-0
- Child development
- Preschool psychiatry