Haemoglobinopathy Registry

The primary purpose of this study is to provide long-term patient follow-up and review of clinical and correlative data outside of clinical trials. Who is it for? The registry will collect information on patients with a diagnosis of sickle cell disease, alpha-thalassemia, beta-thalassemia and other haemoglobinopathies. Study Details Treating clinicians at sites will identify patients and enrol them to the study. The following categories of data items will be collected to the Haemoglobinopathy database using a web portal: Demographic details Clinical presentation Laboratory results Therapy Complications (of therapy or condition) Outcomes It is hoped that the findings from this study will identify patterns of treatment and variation in outcomes, for survival and quality of life. Findings will be valuable in informing optimal treatment strategies.