Establishment of Iranian Pediatric Thrombosis Registry (IPTR) by Iranian Society of Thrombosis and Hemostasis (IRSTH): A Preliminary Report

Abstract

Background Pediatric thromboembolism is a rare and heterogenous condition with increasing trend in children with underlying medical conditions specifically in hospitalized children. Due to the low rate of the thrombotic events in children, most current guidelines are extrapolated from adult studies despite several differences between adults and children. In this regard, the Iranian Society of Thrombosis and Hemostasis (IRSTH) developed the national registry of Iranian Pediatric Thrombosis Registry (IPTR) in 2022. The aims of the IPTR include (1) establishment of a software-based registration system for pediatrics with thrombotic events in academic centers all over the country, and (2) collaborate with international networks to share data and participate in clinical trials and/or observational cohort studies and propose research idea based upon existing data. Methods To establish the registry, several assembly meetings including pediatric hematologist/oncologists, executive committees, biostatisticians, and software designers were held. A web-based software according to the final database consisting of mandatory data including name of the referral centers, patients' demographic data, age at diagnosis, type (venous or arterial) and location of the thrombosis, risk factors, treatment plan and disease-related events, and optional database was set up. Results Over nine months since establishment of the IPTR, data of 69 patients (43 males and 26 females) were registered. Venous and arterial thrombosis were observed in 89.8% and 8.7% of the patients, respectively. The most common sites in venous system were abdominal (41.9%), followed by cerebral venous sinus (32.8%), upper (29.0%) and lower extremities (27.4%). All arterial events occurred in CNS in territory of the middle cerebral artery. The most frequent risk factors were catheters (20%), followed by malignancies (18.8%), surgery (17%), liver disease (15%) and hereditary thrombophilia (10%). Anticoagulant therapy was prescribed in 87.5% of cases. Low molecular weight heparin followed by rivaroxaban were the most common prescribed anticoagulants. Three out of 6 patients with thrombosis of MCA received antiplatelets (aspirin). Conclusion This preliminary report presented the initial data on pediatric thrombotic events following the establishment of the first Iranian pediatric thrombosis registry.