Written Question on Batten Disease: Brineura

Written Questions are submitted by MPs or Lords to receive information from a Department.

See more on: "Batten Disease: Brineura"
Date Title Questioner
16 Oct 2017, 4:16 p.m. Batten Disease: Brineura Nick Thomas-Symonds


To ask the Secretary of State for Health, what steps he has taken to make Brineura (cerliponase alfa) accessible for sufferers of Batten's disease.

Answer (Steve Brine)

Brineura (Cerliponase alfa) for treating Batten’s disease (neuronal ceroid lipofuscinosis type 2) was referred to the National Institute for Health and Care Excellence (NICE) for appraisal on 1 March 2017 under the highly specialised technologies programme. NICE is developing guidance which is currently scheduled for publication in June 2018.

NICE develops authoritative, evidence-based guidance on best practice for the National Health Service. NICE operates with a high degree of independence from Government and is responsible for the recommendations that it makes to the NHS. Its guidance is based on a thorough assessment of the available evidence and is developed through engagement with stakeholders.

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