06 July 2023
The meeting will take place via Zoom, a secure web conferencing tool.
The meeting will run from 9:00am to 5:00pm, although this may be subject to change. Joining links and times for each appraisal/topic and further instructions will be sent 1-2 days before the meeting.
Please note that this agenda is final 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 held on 7 June 2023 – Part 1 only (open session)
- Appraisal of pegunigalsidase alfa for treating Fabry disease [ID3904]
- 5.1. Introduction by the Chair, Dr Charles Crawley – Part 1 only (open session)
- 5.2. Declaration of interests – Part 1 only (open session)
- 5.3. Presentation by the lead team, Dr Bushra Hasnie, Tony Wootton and Gabriel Rogers– 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 Agreement on the content of the Draft Guidance (DG) or Final Draft Guidance (FDG) – Part 2 only (closed session)
- 6.1 Introduction by the Vice-Chair Dr Baljit Singh – Part 1 only (open session)
- 6.2. Declaration of interests – Part 1 only (open session)
- 6.3. Presentation by the lead team, Dr Alistair Patton, Nigel Westwood and Peter Wheatley-Price – 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 Agreement on the content of the Draft Guidance (DG) or Final Draft Guidance (FDG) – Part 2 only (closed session)
- 7.1. Introduction by the Chair, Dr Charles Crawley – Part 1 only (open session)
- 7.2. Declaration of interests – Part 1 only (open session)
- 7.3. Presentation by the Chair, Dr Charles Crawley – Part 1 AND part 2 (open and closed session)
- 7.4. Agreement on the content of the Draft Guidance (DG) or Final Draft Guidance (FDG) – Part 2 only (closed session)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 each of the registration links at the bottom of the page and complete the Zoom registration form, selecting the topics you would like to observe. (You will need to register separately for each one). 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 will close at 4:00pm on Thursday 29 June 2023.
- You will receive your joining links 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 meetings 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 email@example.com.
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 2 August 2023 at 9:00am via Zoom.
Please note all timings are approximate.