25 July 2019

NICE, Level 1, City Tower, Piccadilly Plaza, Manchester M1 4BT

Final agenda

The meeting will start promptly at 10:00 and is expected to finish at approximately 17:00

Please note that this agenda is subject to change before the meeting.

  1. Welcome and introduction to format of meeting – Part 1 only (open session)
  2. Code of conduct for members of the public attending the meeting – Part 1 only (open session)
  3. Apologies – Part 1 only (open session)
  4. Any other business – Part 1 only (open session)
  5. Evaluation of voretigene neparvovec for treating inherited retinal dystrophies caused by RPE65 gene mutations [ID1054]
            5.1. Declarations of interest – Part 1 only (open session)
            5.2. Introduction by the Chair, Dr Peter Jackson– Part 1 only (open session)
            5.3. Presentation by the Chair, Dr Peter Jackson, and the lead team – Part 1 AND part 2 (open and closed session)
            5.4. Agreement on the content of the Evaluation Consultation Document (ECD) or Final Evaluation Determination (FED)– Part 2 only (closed session)
  6. Evaluation of Cerliponase alfa for treating neuronal ceroid lipofuscinosis type 2 [ID943] - Part 2 only (closed session)
    The nature of the discussion for this topic is confidential and will take place in a part 2 session only (part 2 sessions are closed to public observers) 

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Date, time and venue of next meeting

The next meeting will take place on Thursday 29 August 2019 at 10:00am, at NICE, Level 1A, City Tower, Piccadilly Plaza, Manchester, M1 4BT 

Please note all timings are approximate.

How to register

  • Click on the register link below and complete the registration form, selecting the topics you would like to attend.
  • You will receive an automated email response when you submit the registration form. If you do not receive this automated response your registration request has not been received, and you will need to complete and submit the registration form again.
  • Registration will close on Thursday 11 July 2019Please note that it may not be possible to accept late requests. 
  • Should you have queries regarding attending this meeting, please contact the Meetings in Public Coordinator Sandra Robinson.
  • 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.
  • Further information about conducting research is also available in our common questions and answers about meetings in public document.


Registration period: 27 June 2019 to 11 July 2019
Registration is closed.