There is still no clear picture of how UK healthcare providers, clinical experts and patient organisations involved in the ERNs will be able to collaborate from 1 January 2021. Currently, 112 UK healthcare providers (NHS Trusts in England) are involved in 23 of the 24 ERNs with multiple clinical experts actively working with their European colleagues to improve care for patients with rare diseases and complex conditions.
The impact on patients is uncertain because we still do not know what infrastructure, agreements and legislation etc will replace EU counterparts. However, it is clear that in the absence of any agreement, when the UK becomes a third country, membership of ERNs and access to CPMS and the ECP will cease.
This leave questions about UK patients enrolled in CPMS and also ERN registries. To clarify the position ERN eUROGEN UK clinicians have written to the UK Secretary of State for Health, Matt Hancock to request a virtual meeting to discuss the position and potential implications. We will keep you informed of the outcome.