Status In progress
Process HST
ID number 927

Project Team

Project lead Joanne Ekeledo

Email enquiries


Companies sponsors Clinuvel UK
Others Department of Health
  NHS England
  Welsh Government
Patient carer groups British Porphyria Association
  International Porphyria Patients Network
Professional groups British Association of Dermatologists
  Royal College of Pathologists
  Royal College of Physicians
  Mark Holland Metabolic Unit (Salford Royal NHS Foundation Trust)


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 Health Specialised Services Committee


Key events during the development of the guidance:

Date Update
14 March 2019 Committee meeting: 3
09 October 2018 Appeal decision
20 June 2018 Appeal
22 May 2018 - 06 June 2018 Final evaluation determination
20 February 2018 Committee meeting: 2
20 December 2017 - 24 January 2018 Evaluation consultation: 1
23 November 2017 Committee meeting: 1
28 July 2017 Following an update from the company, the first committee meeting for this topic has been rescheduled to allow for an extension to the submission deadline. The first committee meeting will now take place on 23 November 2017. Please note the dates for the second committee meeting and planned publication are unchanged.
17 May 2017 Invitation to participate
17 May 2017 In progress, Topic in evaluation
21 April 2017 Referral

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