Status In progress
Process HST
ID number 861

Provisional Schedule

Expected publication 26 September 2018

Project Team

Project lead Joanne Ekeledo

Email enquiries


Companies sponsors Aegerion Pharmaceuticals Ltd
Others Department of Health
  Great Ormond Street Hospital Metabolic Unit
  Department of Endocrinology, University Hospital Birmingham Foundation Trust
  NHS England
  National Severe Insulin Resistance Service, Addenbrooke’s Hospital
  Oxford Centre for Diabetes, Endocrinology and Metabolism
Patient carer groups Black Health Agency
  Children Living with Inherited Metabolic Diseases (CLIMB)
  Contact a Family
  Diabetes Research and Wellness Foundation
  Diabetes UK
  Genetic Alliance UK
  Independent Diabetes Trust
  Lipodystrophy UK
  Muslim Council of Britain
  National Children’s Bureau
  Network of Sikh Organisations
  South Asian Health Foundation
  Specialised Healthcare Alliance
Professional groups Association of Genetic Nurses & Counsellors
  British Dietetic Association
  British Inherited Metabolic Disease Group
  British Society for Genetic Medicine
  British Society for Human Genetics
  British Society for Paediatric Endocrinology and Diabetes
  Primary Care Diabetes Society
  Royal College of General Practitioners
  Royal College of Nursing
  Royal College of Paediatrics & Child Health
  Royal College of Pathologists
  Royal College of Physicians
  Royal Pharmaceutical Society
  Royal Society of Medicine
  Society for Endocrinology
  Training Research and Education for Nurses in Diabetes (TREND UK)
  UK Clinical Pharmacy Association
  UK Genetic Testing Network
  UK Health Forum


Assessment group Public Health England
  Public Health Wales
Comparator companies None
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
  Health Improvement Scotland
  Medicines and Healthcare Products Regulatory Agency
  National Association of Primary Care
  National Pharmacy Association
  NHS Alliance
  NHS Commercial Medicines Unit
  NHS Confederation
  Scottish Medicines Consortium
  Welsh Government
  Welsh Health Specialised Services Committee
Relevant research groups Clinical Trials Research Unit
  Cochrane Metabolic & Endocrine Disorders Group
  MRC Clinical Trials Unit
  National Institute for Health Research


Key events during the development of the guidance:

Date Update
08 November 2017 Invitation to participate
21 April 2017 Referral
21 April 2017 In progress, Topic referred
21 November 2016 - 19 December 2016 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