The importance of registries in haemophilia care is wide-ranging. For countries with no record of the number of haemophilia patients, registries can provide tangible data on patient numbers to engage authorities and improve access to care. The NNHF impact assessment of 2015 active partners showed that 63% of projects that have a patient registry, use them to inform policy makers.
For countries with haemophilia care in place, registries can be used to monitor health outcomes and therefore provide a means to advocate for better quality care and improve the care provided to patients – 74% of NNHF partners in 2015 said they use registries in this way.
Improving care quality through registries
Overall, the number of NNHF programmes supporting the establishment or strengthening of registries increased by 10% in 2015, reflecting the increasing efforts of NNHF partners in this area. One of these programmes is the Latvia 2 project, which will create a haemophilia registry and provide training to ensure it is incorporated into the haemophilia care process. Whilst the Latvia 1 project focused on regional capacity building, this second project focuses on developing a registry to monitor patient data and health outcomes, to improve the quality of care and treatment provided, and ensure a smooth transition for patients moving from paediatric to adult care systems.
The kick-off meeting was held in Riga on 27 June, and it started the project in the same way that it intends to go on – with the involvement of multi-sector stakeholders. They included the patient association, healthcare professionals, authorities and the developers creating the registry. The aim of the meeting was to agree the parameters of the registry, allocate roles and responsibilities, and provide a briefing to the developers.