| Heading: |
Batten Disease: Cerliponase Alfa |
| Question ID: |
1815310 |
| UIN: |
HL8690 |
| House: |
Lords |
| Date tabled: |
2025-06-23 |
| Asking Member ID: |
4884 |
| Asking Member display name: |
Lord Botham
|
| Asking Member handle: |
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| Asking Member Twitter reference: |
Lord Botham
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| Member interest: |
false |
| Question text: |
To ask His Majesty's Government whether they plan to revisit the Managed Access Agreement for Brineura for treating neuronal ceroid lipofuscinosis type 2 to ensure that children born after January 2026 are not excluded from the treatment. |
| Is named day: |
false |
| Date of holding answer: |
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| Date answered: |
2025-07-01 |
| Date answer corrected: |
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| Is holding answer: |
false |
| Is correcting answer: |
false |
| Answering Member ID: |
347 |
| Answering Member display name: |
Baroness Merron
|
| Answering Member handle: |
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| Answering Member Twitter reference: |
Baroness Merron
|
| Correcting Member ID: |
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| Correcting Member display name: |
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| Correcting Member handle: |
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| Correcting Member Twitter reference: |
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| Answer text: |
The National Institute for Health and Care Excellence (NICE) is currently updating its guidance on the use of cerliponase alfa (Brineura) for the treatment of neuronal ceroid lipofuscinosis type 2 (CLN2) and has not yet published final guidance. NICE publ... |
| Original answer text: |
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| Comparable answer text: |
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| Answering body ID: |
17 |
| Answering body name: |
Department of Health and Social Care |
| Tweeted: |
true |