There are 7 specialist NHS centres across the UK, providing multi-disciplinary healthcare to children with NCL diseases, and in particular for children with CLN2 undergoing treatment with Brineura®.
In England, the BDFA, as a member of the LSD (Lysosomal Storage Disorders) Collaborative, is working with NHS England commissioners to broaden the scope of these Centres to include all types of NCL. There are 5 adult specialist centres as well.
What does this mean for the Batten community?
In the future, the aim within the NHS will be for every child at diagnosis to be referred to their nearest specialist centre. Existing children and adults with Batten disease who are already supported at a different hospital, will be asked whether they would like to transfer to a specialist centre.
How will this help?
It will provide better continuity of care as clinicians across different specialities will be at the same site and able to coordinate appointments. It also helps in the training of more junior clinicians as they will see all aspects of care required for the Batten community
As these centres will have the experts in place, when data is required for clinical trials, it will enable it to be captured effectively and consistently.
Specialist Centres for children 0-18:
- Belfast – Royal Belfast Hospital for Sick Children
- Bristol – Bristol Royal Hospital
- Birmingham – Birmingham Childrens Hospital
- Cardiff - Noah’s Ark Childrens hospital for Wales
- London – Great Ormond Street Hospital
- Manchester – Royal Manchester Childrens Hospital
- Newcastle – Great North Childrens Hospital
Specialist Centres for adults 18 and over:
- Birmingham – Queen Elizabeth Hospital Birmingham
- Cambridge – Addenbrooks Hospital
- London – University College London Hospital
- London - Royal Free Hospital
- Salford - (Manchester) – Salford Royal Hospital