Taking part in NICE’s new way of working

Following a series of early conversations with PANS PANDAS UK, NICE has committed to working with the PANS Guideline Development Group as part of its new guideline collaboration programme.

Last year, NICE launched a new initiative; the guideline collaboration programme. This initiative adds to the current model of NICE-created guidelines and enables a partnership approach which will particularly look to address topics NICE may not be able to cover either due to volume of demand or, as is often the case within rare disease, due to limited levels of available research.

“Working collaboratively on guidelines allows us to share best practice, eliminate unnecessary duplication, and ensure clear and consistent messages across the healthcare system. By partnering with key organisations, we can strengthen implementation and drive meaningful improvements in care outcomes” 

– Eric Power, NICE interim director of the centre for guidelines

What does this mean for the PANS Clinical Guideline? 

Work on the PANS Clinical Guideline began in April 2024, under the guidance of the Royal College of Paediatrics and Child Health (RCPCH). The remit of the PANS Clinical Guideline Development Group (GDG) is to produce a rigorous and robust guideline for PANS and PANDAS in the UK, based on the best available evidence and expert consensus. 

The PANS GDG anticipate that RCPCH endorsement, review and signposting of the guideline by NICE will facilitate wider dissemination and increased confidence in the calibre and methodological rigour of the guideline. 

“We are delighted to be taking this important step together with NICE and RCPCH to publish nationally recognised guidelines which will improve standards of care for children and young people with PANS and PANDAS.” 

Katy Hindson, Health and Policy Lead, PANS PANDAS UK