Purpose Down Syndrome rates are twice as high in the UAE. It is important to obtain the array of demographic, co-morbidities, and health outcomes of children with Down Syndrome (DS) in the UAE, Down Syndrome Gulf Registry
Methods: After IRB approval, a 3-year retrospective chart review of health data for 178 patients presenting to the DS Clinic were collected and analyzed using SPSS software. Systems-based medical co-morbidities associated with Down syndrome and 20 demographic, socio-economic, educational, and maternal age indicators were documented.
A Standardized template of their care plan was incorporated into an EHR system using 2011 AAP DS Health supervision guidelines in a UAE Down Syndrome Clinic. The children with DS were enrolled in the DS registry preventative health and complex care coordination was provided.
Results:
DS in the UAE is starkly 2-2.5 times greater as global incidence of DS.
Conclusions: Children with Down syndrome living in the UAE share similar characteristics with other populations. However, there are some interesting differences in both demographics and co-morbidity patterns. High rates of parental consanguinity, no prenatal screening, and increasing maternal age maybe a factor in increased incidence. Genitourinary anomalies occur frequently, as do the other commonly described medical co-morbidities. Similar cardiac malformations occur, but AVC is not the most common. Higher co-morbidity rates and surgical are noted in the DS clinics of a tertiary hospitals. Select cases with severe compromise highlight the need to follow medical guidelines to optimize outcomes. Further development of the registry to improve outcomes in sleep apnea monitoring, obesity, and other long-term progressive conditions needs to occur