Clinical database National Haemoglobinopathy Registry

Specialised Commissioning has historically provided funding to a small proportion of the total number clinical registries, databases and audits; collecting data relevant to specialised services. These funding arrangements pre-date the existence of NHS England.<br/><br/>Following the change in function of the Department of Health in 2013, NHSE was delegated the responsibility for a number of clinical registries and databases, which it funds outright. Since 2013 Regional commissioning hubs held the budgets for the funding and there was been little central oversight until 2018/19.<br/><br/>In order to improve governance and strategic direction for this area of spend, the funding for these contributions has been centralised from regional to national specialised commissioning. In order to maintain stability for these data collections and to continue payment of these contributions (on which there is a level of commissioning and clinical reliance), approval is sought for the extension of these arrangements for a further 18 months.<br/><br/>These clinical databases are important to specialised service commissioning because population is a requirement of specialised providers (via clinical service specifications) and, in some cases, the clinical databases / registries hold clinical details not located in other information systems, aiding identification of specialised service activity.