PB0281 - Establishment of a national patient-based pediatric thrombosis registry by Iranian Society of Thrombosis and Hemostasis

Background: Disease registry systems provide a strong infrastructure for decision-making and research. Pediatric thrombosis registries are already established to increase knowledge about the epidemiology, diagnosis and treatment of thrombotic events in children.

Aims: Iranian Society of Thrombosis and Hemostasis (IRSTH) proposed a national patient-based pediatric thrombosis registry; Iranian Pediatric Thrombosis Registry (IPTR) using software-based systems to recognize the incidence and natural history of thromboembolic events, identification of risk factors and current diagnostic methods, and anticoagulant treatments received.

Methods: IPTR was approved by Shahid Beheshti University of Medical Sciences in 2022. To provide the minimum data set, several focus groups including executive and supervisory committees, financial sponsors, epidemiologists, and software designer teams were held. According to final data set, an engineering team developed a web-based software; online and offline, (http://disreg.sbmu.ac.ir/q/thromboembolic.html) in which the name of the referral centers, patients' demographic details, age at diagnosis, type (venous or arterial) and location of thrombosis, risk factors, treatment plan and disease-related events were registered as mandatory. Laboratory diagnostic tests, duration of treatment, complications and follow-ups were considered as optional data. This preliminary step was set up in Pediatric Congenital Hematologic Disorders Research Center (PCHD-RC). Two other centers also declared to participate with this project.

Results: Over six months since establishment in PCHD-RC, the data of 40 patients, 24 males (60%) with a mean age of 56.3± 52.7 months were collected. All except one had venous thrombosis (97.5%). CNS and extremities were the most common sites. The most frequent risk factors were malignancies (30%), followed by catheter (20%), liver diseases (15%) and hereditary thrombophilia (10%). Anticoagulant therapy was prescribed in 87.5% of cases. Eight deaths were reported in this phase of the registry.

Conclusion(s): This preliminary report represented a successful web-based software for data collection to improve the quality of care, clinical research and health service planning.