- 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:
- HST Standard
- ID number:
- 6598
Provisional Schedule
- Committee meeting: 1:
- 25 June 2026
- Expected publication:
- 19 August 2026
Project Team
- Project lead
- Thomas Feist
Email enquiries
If you have any queries please email HST@nice.org.uk
- External Assessment Group:
- Bristol Technology Assessment Group, University of Bristol
Stakeholders
- Companies sponsors
- Rhythm Pharmaceuticals
- Others
- Birmingham Children’s Hospital NHS Foundation Trust, Lysosomal Storage Disorders Unit
- Central Manchester Foundation Trust, Willink Unit, Genetic Medicine
- Department of Health and Social Care
- Great Ormond Street Hospital Metabolic Unit
- NHS England
- Salford Royal NHS Foundation Trust Mark Holland Metabolic Unit
- St Thomas’ Hospital, London
- University Hospital Birmingham Foundation Trust, Department of Endocrinology
- Patient carer groups
- Bardet-Biedl Syndrome UK
- Beacon for Rare Diseases
- Beat
- British Obesity Society
- British Obesity Surgery Patients Association
- Contact a Family
- Gene People
- Genetic Alliance UK
- National Centre for Eating Disorders
- Obesity Health Alliance
- Obesity UK
- South Asian Health Foundation
- Specialised Healthcare Alliance
- Weight Concern
- Professional groups
- Association for the Study of Obesity
- Association of Genetic Nurses & Counsellors
- British Association of Endocrine and Thyroid Surgeons
- British Geriatrics Society
- British Nutrition Foundation
- British Obesity Surgery Society
- British Society for Gene and Cell Therapy
- British Society for Genetic Medicine
- British Society for Paediatric Endocrinology and Diabetes (BSPED)
- National Metabolic Biochemistry Network
- Neonatal and Paediatric Pharmacists Group
- Nutrition Society
- Obesity Management Association
- Royal College of General Practitioners
- Royal College of Nursing
- Royal College of Paediatrics and Child Health
- Royal College of Pathologists
- Royal College of Physicians
- Royal Pharmaceutical Society
- Royal Society of Medicine
- Society for Endocrinology
- TREND UK
- UK Clinical Pharmacy Association
- Associated public health groups
- Public Health Wales
- UK Health Security Agency
- 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 - 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 Confederation
- NHS Wales Joint Commissioning Committee
- Scottish Medicines Consortium
- Welsh Government
- Relevant research groups
- Cochrane Cystic Fibrosis & Genetic Disorders Group
- Cochrane Metabolic & Endocrine Disorders Group
- Cochrane UK
- Genomics England
- MRC Clinical Trials Unit
- National Institute for Health Research
- Wellcome-MRC Institute of Metabolic Science, Addenbrookes
Timeline
Key events during the development of the guidance:
| Date | Update |
|---|---|
| 18 December 2025 | Invitation to participate |
| 18 December 2025 | In progress |
| 01 December 2025 - 15 December 2025 | Consultation on suggested remit, draft scope and provisional stakeholder list of consultees and commentators |
| 05 November 2025 | Awaiting development. Status change linked to Topic Selection Decision being set to Selected |
For further information on our processes and methods, please see our CHTE processes and methods manual