Suggested remit: To appraise the clinical and cost effectiveness of burosumab within its marketing authorisation for treating X-linked hypophosphatemia (XLH) in adults
Status In progress
Technology type Medicine
Decision Selected
Reason for decision Anticipate the topic will be of importance to patients, carers, professionals, commissioners and the health of the public to ensure clinical benefit is realised, inequalities in use addressed, and help them make the best use of NHS resources
Process TA
ID number 3822

Project Team

Project lead Vonda Murray

Email enquiries


Companies sponsors Kyowa Kirin (burosumab)
Others Cambridge University Hospitals NHS Foundation Trust, Addenbrooke's Hospital
  Charles Dent Metabolic Unit, UCLH
  Department of Health and Social Care
  Leeds Teaching Hospitals NHS Trust
  Manchester University Hospitals NHS Foundation Trust, Metabolic Bone Disease Team
  NHS England
  Northern General Hospital, Metabolic Bone Centre
  Nuffield Orthopaedic Centre
  Royal National Orthopaedic Hospital
  University Hospitals Birmingham NHS Foundation Trust
  University Hospitals Bristol, Rheumatology Department
  University of Edinburgh Western General Hospital, Rheumatic Diseases Unit
  Welsh Government
Patient carer groups Beacon
  Brain and Spine Foundation
  Brittle Bone Society
  Genetic Alliance UK
  Metabolic Support UK
  Pain Concern
  Pain UK
  South Asian Health Foundation
  Specialised Healthcare Alliance
Professional groups British Dental Association
  British Geriatrics Society
  British Institute of Musculoskeletal Medicine
  British Orthopaedic Association
  British Society for Paediatric Endocrinology and Diabetes
  British Society for Rehabilitation Medicine
  Physiotherapy Pain Association
  Royal College of General Practitioners
  Royal College of Nursing
  Royal College of Pathologists
  Royal College of Physicians
  Royal Pharmaceutical Society
  Royal Society of Medicine
  Society for Endocrinology
  UK Clinical Pharmacy Association
Associated public health groups Public Health Wales
  UK Health Security Agency
Comparator companies A A H Pharmaceuticals (alphacalcitriol)
  Atnahs Pharma UK (calcitriol)
  Sigma Pharmaceuticals (alphacalitriol)
General commentators All Wales Therapeutics and Toxicology Centre
  Allied Health Professionals Federation
  Board of Community Health Councils in Wales
  British National Formulary
  Care Quality Commission
  Department of Health, Social Services and Public Safety for Northern Ireland
  Healthcare Improvement Scotland
  Inherited Metabolic and Lysosomal Disease Service, Cardiff and Vale UHB
  Medicines and Healthcare products Regulatory Agency
  National Association of Primary Care
  National Pharmacy Association
  National Services Division
  NHS Alliance
  NHS Confederation
  Scottish Medicines Consortium
  Welsh Health Specialised Services Committee
Relevant research groups Bone Research Society
  Chronic Pain Policy Coalition
  Cochrane Musculoskeletal Group
  Cochrane UK
  Genomics England
  MRC Clinical Trials Unit
  National Institute for Health Research
  Orthopaedic Research UK
  Pain Relief Foundation
  Society of Back Pain Research


Key events during the development of the guidance:

Date Update
29 November 2023 - 03 January 2024 Draft guidance
08 November 2023 Committee meeting
23 February 2023 Invitation to participate
18 January 2023 Please note that following on from a request received from the company, the timelines for this appraisal have been revised and the appraisal is now anticipated to begin in early-February 2023. These timings are based on a request from the company to reschedule the initial date set by NICE, in order to facilitate a suitably comprehensive and robust submission.
11 July 2022 Awaiting development. Status change linked to Topic Selection Decision being set to Selected
11 July 2022 Topic selection. Change decision to selected
08 July 2022 Topic selection
07 January 2022 In progress. Scoping commenced
09 December 2021 The topic was discussed at the Topic Selection Oversight Panel (TSOP) in October 2021. The panel concluded that the topic was suitable for a Technology Appraisal. Following conversations with the company, the scheduling of the evaluation is to be confirmed and stakeholders will be updated in due course.
04 March 2021 (10:00) Scoping workshop
07 January 2021 - 04 February 2021 Consultation on suggested remit, draft scope and provisional stakeholder list of consultees and commentators

For further information on our processes and methods, please see our CHTE processes and methods manual