To evaluate the benefits and costs of volanesorsen within its licensed indication for treating adults with familial chylomicronaemia syndrome for national commissioning by NHS England.
Status In progress
Process HST
ID number 1326

Provisional Schedule

Expected publication 27 May 2020

Project Team

Project lead Jo Ekeledo

Email enquiries


Companies sponsors Akcea Therapeutics (volanesorsen)
Others Department of Health and Social Care
  NHS England
  Specialised Endocrinology Clinical Reference Group (CRG)
Patient carer groups HEART UK
  LPLD Alliance
Professional groups Royal College of Physicians


General commentators All Wales Therapeutics and Toxicology Centre
  British National Formulary
  Department of Health, Social Services and Public Safety for Northern Ireland
  Healthcare Improvement Scotland
  Scottish Medicines Consortium
  Welsh Government
  Welsh Health Specialised Services Committee


Key events during the development of the guidance:

Date Update
26 February 2020 Committee meeting: 2
03 January 2020 - 27 January 2020 Evaluation consultation: 1
28 November 2019 Committee meeting: 1
02 April 2019 The forthcoming committee meeting to discuss volanesorsen for treating familial chylomicronaemia syndrome has been rearranged. This is to allow the company (Akcea Therapeutics) additional time to prepare their submission for consideration by the HST committee. Volanesorsen for treating familial chylomicronaemia syndrome will be now considered by committee on Thursday 28 November 2019.
02 August 2018 Following a regulatory timing update received from the company the first committee meeting has been rescheduled to Thursday 10 January 2019 at NICE Manchester
18 April 2018 Invitation to participate
17 April 2018 In progress, In progress
18 January 2018 (14:00) Scoping workshop (Manchester)
22 November 2017 - 20 December 2017 Consultation on suggested remit, draft scope and provisional matrix of consultees and commentators

For further information on how we develop guidance, please see our page about NICE highly specialised technologies guidance