Sickle Hemoglobinopathy reseArch in Zimbabwe (SHAZ)

点击翻译按钮获取中文摘要

Abstract/Summary The goal of the Sickle Hemoglobinopathy reseArch in Zimbabwe (SHAZ) application is to establish a sustainable infrastructure and operation aimed at addressing the limited data and gaps in Sickle cell disease (SCD) management that currently exists in Zimbabwe and Zambia by contributing to the SCD in Sub-Saharan Africa (SSA) network consortium registry and biorepository. SHAZ aims to create accomplished SCD clinicians and research personnel who will focus on introduction and implementation of the SCD in SSA network registry efforts, enrolling at least 4,000 individuals with SCD from Zambia and Zimbabwe over a five-year period. The SHAZ team will aim to integrate regional SCD evidence-based management guidelines and will develop three cohort studies to generate more evidence on heritability of clinical phenotype of SCD, describing the natural history and clinical correlates of adverse outcomes in SCD patients specifically the association between abnormal cerebral blood flow and foetal hemoglobin level as a risk factor for stroke. Furthermore, implementation science research will be utilized as a tool to promote uptake of the evidence-based practices that improve outcomes in SCD patients namely: newborn screening, improved nutrition and hydroxyurea use in the two countries.