Data Collection

We collect patient data on a regular basis and providing we have consent from the Patient we submit the data via The National Haemoglobinopathy Registry (NHR). This is a database of patients with red cell disorders (mainly Sickle Cell Disease and Thalassaemia Major) living in the UK. This new database collects data,which is required by the Department of Health from Haemoglobinopathy centres. The central aim of the registry is to improve patient care.

National Haemoglobinopathy Registry

Local Patient Data

We collect local patient data for patients seen by BCH in our follow up clinics and this held on our Haemoglobinopathy Database which is only seen and regularly updated by our teams. This information includes Neonatal Screening, New to area, New Diagnosis, Patients discussed in our weekly Haemoglobinopathy MDT meetings.

We can produce reports and graphical data tables and charts to show us on average how many patients are followed up a BCH and where they have come from.

Below are a few links to pdf charts and tables showing patients with a variety of blood disorders and geographical areas. (All data is anonymised)

With this information database which is updated regularly, we can run quarterly audits.