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Paediatric Acute-onset Neuropsychiatric Syndrome and Paediatric Autoimmune Neuropsychiatric Disorders: Health Services

Answer

Further to the answer provided on 20 July in response to Question 18432, the clinical guideline remains in development through the PANS PANDAS Steering Group, under the leadership of the Royal College of Paediatrics and Child Health. The Steering Group brings together clinicians, professional organisations, families, and patient representatives, and as well as developing the clinical guideline, its work includes supporting education, research, and improved awareness of these conditions.

Once finalised, the National Institute for Health and Care Excellence anticipates reviewing the guideline and, if it considers it to be of sufficient quality, will signpost to it on its website with commentary on its strengths and limitations. The guideline will also help inform any future awareness and education activity, including the training curricula produced jointly by regulators, royal colleges, and professional bodies.

Clinical decisions, including prescribing decisions, will remain for the treating clinician, informed by professional judgement, the available evidence, and relevant guidance. Each clinician is responsible for keeping that knowledge up to date. Integrated care boards, primary care providers, and National Health Service trusts are also expected to keep abreast of emerging evidence and guidance and consider it through their clinical governance arrangements.

There is currently no routine national data collection on the number of children and young people affected by paediatric acute-onset neuropsychiatric syndrome (PANS) and paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS).

The Steering Group’s Research Group is progressing work to improve understanding of the number of children and young people affected. Applications have been made to the independent British Paediatric Surveillance Unit and Child and Adolescent Psychiatry Surveillance System.

Information on research funded through the National Institute for Health and Care Research (NIHR) relating to PANS and PANDAS is available through the NIHR Funding and Awards website. The NIHR welcomes applications for research into all aspects of human health, including PANS and PANDAS. The NIHR Funding and Awards website is available at the following link:

https://fundingawards.nihr.ac.uk/

Secondary information

Type

Written question

Reference

26762

Session

2026-27

Grouped for answer

Yes

Subjects

Devolution Health services Paediatric autoimmune neuropsychiatric disorders Paediatric acute-onset neuropsychiatric syndrome

Link

View this Written question on www.parliament.uk