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Burosumab for treating X-linked hypophosphataemia in children and young people (HST8)

Evidence-based recommendations on burosumab (Crysvita) for treating X-linked hypophosphataemia (XLH) in children and young people

Highly specialised technologies guidance Published October 2018

Eliglustat for treating type 1 Gaucher disease (HST5)

Evidence-based recommendations on eliglustat (Cerdelga) for treating type 1 Gaucher disease in adults

Highly specialised technologies guidance Published June 2017

Asfotase alfa for treating paediatric-onset hypophosphatasia (HST6)

Evidence-based recommendations on asfotase alfa (Strensiq) for treating paediatric-onset hypophosphatasia in adults and children

Highly specialised technologies guidance Published August 2017

Migalastat for treating Fabry disease (HST4)

Evidence-based recommendations on migalastat (Galafold) for treating Fabry disease in people over 16

Highly specialised technologies guidance Published February 2017

Strimvelis for treating adenosine deaminase deficiency–severe combined immunodeficiency (HST7)

Evidence-based recommendation on Strimvelis for adenosine deaminase deficiency–severe combined immunodeficiency (ADA–SCID)

Highly specialised technologies guidance Published February 2018

Eculizumab for treating atypical haemolytic uraemic syndrome (HST1)

Evidence-based recommendations on culizumab (Soliris) for treating atypical haemolytic uraemic syndrome (aHUS)

Highly specialised technologies guidance Published January 2015

Ataluren for treating Duchenne muscular dystrophy with a nonsense mutation in the dystrophin gene (HST3)

Evidence-based recommendations on ataluren (Translarna) for treating Duchenne muscular dystrophy with a nonsense mutation in the dystrophin gene..

Highly specialised technologies guidance Published July 2016

Elosulfase alfa for treating mucopolysaccharidosis type IVa (HST2)

Evidence-based recommendations on elosulfase alfa (Vimizim) for treating mucopolysaccharidosis type IVa (MPS IVA)

Highly specialised technologies guidance Published December 2015

Inotersen for treating hereditary transthyretin amyloidosis (HST9)

Evidence-based recommendations on inotersen (Tegsedi) for stage 1 and stage 2 polyneuropathy in adults with hereditary transthyretin amyloidosis

Highly specialised technologies guidance Published May 2019

Voretigene neparvovec for treating inherited retinal dystrophies caused by RPE65 gene mutations (HST11)

Evidence-based recommendations on voretigene neparvovec (Luxturna) for RPE65-mediated inherited retinal dystrophies (confirmed biallelic RPE65 gene mutations)

Highly specialised technologies guidance Published October 2019

Patisiran for treating hereditary transthyretin amyloidosis (HST10)

Evidence-based recommendations on patisiran (Onpattro) for treating hereditary transthyretin amyloidosis in adults with stage 1 and stage 2 polyneuropathy

Highly specialised technologies guidance Published August 2019

Cerliponase alfa for treating neuronal ceroid lipofuscinosis type 2 (HST12)

Evidence-based recommendations on cerliponase alfa (Brineura) for treating neuronal ceroid lipofuscinosis type 2 (CLN2) in children

Highly specialised technologies guidance Published November 2019

Afamelanotide for treating erythropoietic protoporphyria [ID927]

In development [GID-HST10009] Expected publication date: TBC

Highly specialised technologies guidance In development

VTS-270 for treating Niemann-Pick type C1 (ID1267)

Proposed [GID-HST10020] Expected publication date: TBC

Highly specialised technologies guidance Proposed

OTL-101 for treating adenosine deaminase deficiency–severe combined immunodeficiency [ID1152]

Proposed [GID-HST10022] Expected publication date: TBC

Highly specialised technologies guidance Proposed

Ravulizumab for treating paroxysmal nocturnal haemoglobinuria ID1457

Proposed [GID-HST10023] Expected publication date: TBC

Highly specialised technologies guidance Proposed

Velmanase alfa for treating alpha-mannosidosis [ID800]

In development [GID-HST10010] Expected publication date: TBC

Highly specialised technologies guidance In development

Onasemnogene abeparvovec for treating spinal muscular atrophy type 1 [ID1473]

In development [GID-HST10026] Expected publication date: 08 September 2020

Highly specialised technologies guidance In development

Lysosomal acid lipase deficiency - sebelipase alfa [ID737]

In development [GID-LYSOSOMALACIDLIPASEDEFICIENCYSEBELIPASEALFAID737] Expected publication date: TBC

Highly specialised technologies guidance In development

Metreleptin for treating lipodystrophy (ID861)

In development [GID-HST10011] Expected publication date: TBC

Highly specialised technologies guidance In development

Intrathecal idursulfase for treating Mucopolysaccharidosis type II ID1223

Proposed [GID-HST10019] Expected publication date: TBC

Highly specialised technologies guidance Proposed

Volanesorsen for treating familial chylomicronaemia syndrome [ID1326]

In development [GID-HST10015] Expected publication date: 03 June 2020

Highly specialised technologies guidance In development

Human alpha1-proteinase inhibitor for treating emphysema ID856

In development [GID-HST10017] Expected publication date: TBC

Highly specialised technologies guidance In development

OTL-200 for treating metachromatic leukodystrophy [ID1666]

Proposed [GID-HST10028] Expected publication date: TBC

Highly specialised technologies guidance Proposed

Elosulfase alfa for treating mucopolysaccharidosis type IVa (review of HST2) [ID1643]

In development [GID-HST10027] Expected publication date: 11 November 2020

Highly specialised technologies guidance In development

Human alpha1-proteinase inhibitor for treating emphysema ID856: evaluation consultation

We are listening to your views on this highly specialised technology. Comments close 09 January 2020.

Highly specialised technologies guidance In consultation

Renal replacement therapy and conservative management (NG107)

This guideline covers renal replacement therapy (dialysis and transplantation) and conservative management for people with chronic kidney disease stages 4 and 5. It aims to improve quality of life by making recommendations on planning, starting and switching treatments, and coordinating care.

NICE guideline Published October 2018

Routine preoperative tests for elective surgery (NG45)

This guideline covers routine preoperative tests for people aged over 16 who are having elective surgery. It aims to reduce unnecessary testing by advising which tests to offer people before minor, intermediate and major or complex surgery, taking into account specific comorbidities (cardiovascular, renal and respiratory conditions and diabetes and obesity). It does not cover pregnant women or people having cardiothoracic procedures or neurosurgery.

NICE guideline Published April 2016

Sepsis: recognition, diagnosis and early management (NG51)

This guideline covers the recognition, diagnosis and early management of sepsis for all populations. The guideline committee identified that the key issues to be included were: recognition and early assessment, diagnostic and prognostic value of blood markers for sepsis, initial treatment, escalating care, identifying the source of infection, early monitoring, information and support for patients and carers, and training and education.

NICE guideline Published July 2016 Last updated September 2017

Intrapartum care for women with existing medical conditions or obstetric complications and their babies (NG121)

This guideline covers care during labour and birth for women who need extra support because they have a medical condition or complications in their current or previous pregnancy. The guideline also covers women who have had no antenatal care. It aims to improve experiences and outcomes for women and their babies.

NICE guideline Published March 2019 Last updated April 2019

Cerebral palsy in adults (NG119)

This guideline covers care and support for adults with cerebral palsy. It aims to improve health and wellbeing, promote access to services and support participation and independent living.

NICE guideline Published January 2019

Renal and ureteric stones: assessment and management (NG118)

This guideline covers assessing and managing renal and ureteric stones. It aims to improve the detection, clearance and prevention of stones, so reducing pain and anxiety, and improving quality of life.

NICE guideline Published January 2019

Tuberculosis (NG33)

This guideline covers preventing, identifying and managing latent and active tuberculosis (TB) in children, young people and adults. It aims to improve ways of finding people who have TB in the community and recommends that everyone under 65 with latent TB should be treated. It describes how TB services should be organised, including the role of the TB control board.

NICE guideline Published January 2016 Last updated September 2019

Post-traumatic stress disorder (NG116)

This guideline covers recognising, assessing and treating post-traumatic stress disorder (PTSD) in children, young people and adults. It aims to improve quality of life by reducing symptoms of PTSD such as anxiety, sleep problems and difficulties with concentration. Recommendations also aim to raise awareness of the condition and improve coordination of care.

NICE guideline Published December 2018

Chronic obstructive pulmonary disease in over 16s: diagnosis and management (NG115)

This guideline covers diagnosing and managing chronic obstructive pulmonary disease or COPD (which includes emphysema and chronic bronchitis) in people aged 16 and older. It aims to help people with COPD to receive a diagnosis earlier so that they can benefit from treatments to reduce symptoms, improve quality of life and keep them healthy for longer.

NICE guideline Published December 2018 Last updated July 2019

Preterm labour and birth (NG25)

This guideline covers the care of women at increased risk of, or with symptoms and signs of, preterm labour (before 37 weeks), and women having a planned preterm birth. It aims to reduce the risks of preterm birth for the baby and describes treatments to prevent or delay early labour and birth.

NICE guideline Published November 2015 Last updated August 2019

Antenatal care for uncomplicated pregnancies (CG62)

This guideline covers the care that healthy women and their babies should be offered during pregnancy. It aims to ensure that pregnant women are offered regular check-ups, information and support.

Clinical guideline Published March 2008 Last updated February 2019

Thyroid disease: assessment and management (NG145)

This guideline covers investigating all suspected thyroid disease and managing primary thyroid disease (related to the thyroid rather than the pituitary gland). It does not cover managing thyroid cancer or thyroid disease in pregnancy. It aims to improve quality of life by making recommendations on diagnosis, treatment, long-term care and support.

NICE guideline Published November 2019

Chronic heart failure in adults: diagnosis and management (NG106)

This guideline covers diagnosing and managing chronic heart failure in people aged 18 and over. It aims to improve diagnosis and treatment to increase the length and quality of life for people with heart failure.

NICE guideline Published September 2018

Pancreatitis (NG104)

This guideline covers managing acute and chronic pancreatitis in children, young people and adults. It aims to improve quality of life by ensuring that people have the right treatment and follow-up, and get timely information and support after diagnosis.

NICE guideline Published September 2018

Mental health of adults in contact with the criminal justice system (NG66)

This guideline covers assessing, diagnosing and managing mental health problems in adults (aged 18 and over) who are in contact with the criminal justice system. It aims to improve mental health and wellbeing in this population by establishing principles for assessment and management, and promoting more coordinated care planning and service organisation across the criminal justice system.

NICE guideline Published March 2017

Spondyloarthritis in over 16s: diagnosis and management (NG65)

This guideline covers diagnosing and managing spondyloarthritis that is suspected or confirmed in adults who are 16 years or older. It aims to raise awareness of the features of spondyloarthritis and provide clear advice on what action to take when people with signs and symptoms first present in healthcare settings. It also provides advice on the range of treatments available.

NICE guideline Published February 2017 Last updated June 2017

Psychosis and schizophrenia in children and young people: recognition and management (CG155)

This guideline covers recognising and managing psychosis and schizophrenia in children and young people. It aims to improve early recognition of psychosis and schizophrenia so that children and young people can be offered the treatment and care they need to live with the condition.

Clinical guideline Published January 2013 Last updated October 2016

Haematological cancers: improving outcomes (NG47)

This guideline covers integrated diagnostic reporting for diagnosing haematological cancer in adults, young people and children. It also covers staffing, facilities (levels of care) and multidisciplinary teams needed for adults and young people. It aims to improve care for people with suspected or diagnosed cancer by promoting best practice on the organisation of haematological cancer services.

NICE guideline Published May 2016

Low back pain and sciatica in over 16s: assessment and management (NG59)

This guideline covers assessing and managing low back pain and sciatica in people aged 16 and over. It outlines physical, psychological, pharmacological and surgical treatments to help people manage their low back pain and sciatica in their daily life. The guideline aims to improve people’s quality of life by promoting the most effective forms of care for low back pain and sciatica.

NICE guideline Published November 2016

Cerebral palsy in under 25s: assessment and management (NG62)

This guideline covers diagnosing, assessing and managing cerebral palsy in children and young people from birth up to their 25th birthday. It aims to make sure they get the care and treatment they need for the developmental and clinical comorbidities associated with cerebral palsy, so that they can be as active and independent as possible.

NICE guideline Published January 2017

End of life care for infants, children and young people with life-limiting conditions: planning and management (NG61)

This guideline covers the planning and management of end of life and palliative care in for infants, children and young people (aged 0–17 years) with life-limiting conditions. It aims to involve children, young people and their families in decisions about their care, and improve the support that is available to them throughout their lives.

NICE guideline Published December 2016 Last updated July 2019

Service user experience in adult mental health: improving the experience of care for people using adult NHS mental health services (CG136)

This guideline covers the components of a good experience of service use. It aims to make sure that all adults using NHS mental health services have the best possible experience of care.

Clinical guideline Published December 2011

Bedwetting in under 19s (CG111)

This guideline covers assessing and treating bedwetting in people aged under 19. It aims to reduce bedwetting and the distress this causes by explaining what to ask in an assessment, what advice to provide, and which treatments are effective.

Clinical guideline Published October 2010

Acute heart failure: diagnosis and management (CG187)

This guideline covers diagnosing and managing acute heart failure or possible acute heart failure in people aged 18 and over. It aims to improve the immediate care of someone who is acutely unwell as a result of heart failure.

Clinical guideline Published October 2014