Status | In progress |
Technology type | Medicine |
Decision | Selected |
Process | HST |
ID number | 737 |
Referral date | 01 June 2015 |
Provisional Schedule
1st committee meeting: |
20 January 2016
|
Email enquiries
- If you have any queries please email scheduling@nice.org.uk
Stakeholders
Companies sponsors | Alexion Pharma UK |
Others | Department of Health |
NHS England | |
Patient carer groups | British Liver Trust |
Children’s Liver Disease Foundation | |
Children Living with Inherited Metabolic Diseases | |
HEART UK | |
MPS Society | |
Professional groups | Addenbrooke's Lysosomal Disorders Unit |
Birmingham Children’s Hospital NHS Foundation Trust | |
British Inherited Metabolic Disease Group | |
London Guy’s Hospital Genetic Centre | |
European Lysosomal Storage Disorder Nurses Group | |
Mark Holland Metabolic Unit for Adult Inherited Metabolic Disorders, SRFT | |
Royal College of Nursing | |
Royal College of Pathologists | |
Royal College of Physicians | |
Willink Unit, Genetic Medicine, CMFT | |
Evidence review group | Kleijnen Systematic Reviews Ltd |
National Institute for Health Research Health Technology Assessment | |
General commentators | Department of Health, Social Services and Public Safety for Northern Ireland |
Healthcare Improvement Scotland | |
Relevant research groups | Cochrane Cystic Fibrosis and Genetic Disorders Group |
Timeline
Key events during the development of the guidance:
Date | Update |
---|---|
26 July 2021 | After having discussions on how to progress this topic, we are now able to provide an update. I can confirm that we are proceeding with an HST evaluation for sebelipase. This work will target a new decision problem, for the Wolman’s disease population. We will plan this topic into work programme to re-start as soon as possible. We will provide further details on the timings and process once finalised. |
15 March 2021 | In progress. In progress |
15 March 2021 | We are in the process of arranging a meeting between NICE, Alexion, NHS England and Improvement, and patient and clinical experts to discuss the way forward to consider access for sebelipase. We will provide an update to confirm the next steps after this meeting has taken place. |
17 August 2017 | Committee meeting: 5 |
18 July 2017 | Appeal decision |
25 April 2017 | Appeal |
08 February 2017 - 01 March 2017 | Final evaluation determination |
20 July 2016 | Committee meeting: 3 |
26 April 2016 - 25 May 2016 | Evaluation consultation: 2 |
22 March 2016 | Committee meeting: 2 |
11 February 2016 - 10 March 2016 | Evaluation consultation: 1 |
For further information on our processes and methods, please see our CHTE processes and methods manual