Pediatric non-malignant blood disorders hospital-based registry: a ten-year report from Saudi Arabia

is dedicated to evaluate, diagnose and treat children with a wide range of non-malignant blood disorders (NMBDs) with an Institutional Review Board (IRB) approved hospital-based registry.Methodology: Retrospective analysis of registry data from REDCap (Vanderbilt University) web-based registry database collecting demographic, consanguinity, diagnostic and survival data since 2015.Results: This Hospital-based registry was established in 2015, and during the last ten-years a total of 1095 cases were registered.Among those 143 (13%) were screened and remain under work-up as they persistently continue to show symptoms (anemia,10%; coagulopathy,7%; bleeding,2%; cytopenia 2%; primary thrombocytosis,2%) .Total 786 (72%) patients reached a confirmed diagnosis of NMBDs with a median age at diagnosis of 7.3 (2 days -13.9) years, there were 463(59%) males and 323 (41%) females.Diagnostic statistics showed the majority of the cases were diagnosed with hemoglobinopathies in 338 (30%) followed by thrombosis in 103 (9%) and bleeding disorders in 84 (8%) patients.Positive consanguinity was observed in 32% (254) and when compared by diagnoses a statistically significant (p=0.001)correlation for hemoglobinopathies and bleeding disorders was observed.This registry is capable of pooling data to achieve sufficient sample size for epidemiological and/or clinical research for rare diseases: rare bleeding disorder (n=28), Glanzmann thrombasthenia (n=11), hypereosinophilic syndrome (n=3), and Bernard Soulier (n=2).