Initially, the aims were modest and there were clear limitations on what data could be collected. The main questions

were to determine how many PWH there were in the UK, where they were treated and how much treatment they needed. This data became essential in guiding production and distribution of therapeutic products in the UK. The early and continued success of the UK National Patient Registry or National Haemophilia Database (NHD) is due to strong governance by the leaders of haemophilia care in the UK, the unified healthcare system and the mandatory requirement that all haemophilia Ferroptosis cancer centres submit an annual return to the NHD. Rapid developments in information technology have facilitated the collection and recording of larger amounts of data and more sophisticated data. There are now many functions for modern patient registries (Table 1) and more stakeholders (Table 2) who have a key interest in the data derived from registries such as that in learn more the UK. The NHD has had an important role in studying the natural history of haemophilia and has facilitated

the analysis of life expectancy in haemophilia in the UK. Improvements in care and the improved safety of therapeutic products have had a positive impact on life expectancy. It is clear that this will be useful in planning services and resource allocation for the increasing population of PWH, including the impact of the emerging population of older individuals with haemophilia The NHD has also highlighted the issue of the migration to the UK of PWH from other countries through economic migration, migration

to secure better medical care or through refugee status. The key demographics of the patients registered in the UK may also be used to help patient care directly by guiding investigations in extended family members, e.g. molecular diagnosis and facilitated extended communication between centres in liaison and in treatment. The NHD provided important data on the transmission and natural history of the hepatitis B and hepatitis C viruses (HBV and HCV), and HIV in the haemophilia population, and demonstrated that there have not been any transmissions of HCV or HIV through selleck chemical factor concentrates after the introduction of effective virucidal treatment and recombinant technology. However, the emergence of variant Creutzfeldt-Jakob disease (vCJD) in the UK in the 1990s and the subsequent evidence that it could potentially be transmitted through blood products caused major alarm in the haemophilia community and the public health organizations in the UK. The detailed information on the treatment histories of all registered patients, where these patients had been treated and where they were currently being treated, meant that the UK centres could respond quickly to inform patients and institute public health safety measures to reduce the potential risk of transmission of infection [4].