07 November 2024
via Zoom
Draft Agenda
The meeting will take place via Zoom, a secure web conferencing tool.
The meeting will run from 9:00am, although this may be subject to change. The joining link and time for the topic and further instructions will be sent 1-2 days before the meeting.
Please note that this agenda is a draft and is subject to change before the meeting.
- Welcome and introduction to format of meeting – Part 1 only (open session)
- Apologies – Part 1 only (open session)
- Any other business – Part 1 only (open session)
- Minutes from the last committee meeting meeting held on 10 October 2024. – Part 1 only (open session)
- Evaluation of fosdenopterin for treating molybdenum cofactor deficiency type A [ID6264]
- 5.1. Introduction by Chair, Dr Paul Arundel – Part 1 only (open session)
- 5.2. Declaration of interests – Part 1 only (open session)
- 5.3. Presentation by the Chair, Dr Paul Arundel – Part 1 AND part 2 (open and closed session)
- 5.4. Agreement on the content of the Draft Guidance (DG) or Final Draft Guidance (FDG) – Part 2 only (closed session)
- Evaluation of olipudase alfa for treating Niemann-Pick disease types A and B [ID3913 ]
- 6.1. Introduction by Chair, Dr Paul Arundel – Part 1 only (open session)
- 6.2. Declaration of interests – Part 1 only (open session)
- 6.3. Presentation by Chair, Paul Arundel – Part 1 AND part 2 (open and closed session)
- 6.4. Agreement on the content of the Draft Guidance (DG) or Final Draft Guidance (FDG) – Part 2 only (closed session)
To print an agenda, please right click and select 'Print' from the menu.
Important information on how to register
- Click on the registration link at the bottom of the page and complete the Zoom registration form.
- Please register with your full name as this is how it will be displayed during the committee meeting and please choose ‘Public observer’ as the attendee type.
- You must use the email address that you are registering with to join the meeting. Please ensure you type in the correct address. Also check that if you are using a work email address, that it supports the use of Zoom. If in doubt, use a personal email address.
- Registration closed at 4:00pm on Thursday 31 October 2024.
- You will receive your joining link 1-2 days before the meeting with the time you need to join. You must click on the link to join, NOT use the ID and password.
- Please keep these in a safe and in an accessible place for the meeting to minimise any delay on the day.
- Joining instructions will also be sent to you 1-2 days before the meeting.
- We will not be able to accept any late requests or name changes after registration closes.
- As a public observer, you will be able to listen to the business of the meeting, except where confidential information is being discussed. However, you will not be able to participate in the committee's discussions or ask questions, take part in voting, or put your views to the members of the committee.
- Please read through our common questions and answers about meetings in public document for further information on virtual meetings.
Privacy statement – These meetings are being held via Zoom either as a meeting or webinar and your name, email and IP address will be processed. We ask for this data to help facilitate the event and monitor attendance. We also ask you to share any accessibility needs that would support you during the virtual meeting. If the web meeting you are attending offers an interactive poll or Q&A session, participation is not mandatory, however your name may be processed with your poll responses and questions. We store this information in Zoom for 6 months, after which it is automatically deleted. After you have attended a meeting, we may also send you a feedback form so you can tell us about your experience and help us make any improvements. The feedback is anonymous and you cannot be identified. Further information about how we manage personal data at NICE can be found on our privacy notice – https://www.nice.org.uk/privacy-notice
Should you have any queries regarding observing this meeting, please contact the meeting in public coordinator.
Registrants wishing to conduct a research study on committee meetings and/or NICE processes will require prior permission. Contact the NICE Enquiry Handling team at nice@nice.org.uk.
REGISTRATION IS NOW CLOSED
As you are registering directly on Zoom, your place is guaranteed so you will not receive a confirmation or approval email. Please make sure you note the meeting date/time in your diary, and you will receive your Zoom joining links and further instructions 1-2 days before the meeting.
Date and time of next meeting
The next meeting will take place on Wednesday 11 December 2024 at 9:00am via Zoom.
Please note all timings are approximate.