Get involved in guideline development
The lack of clinical guidelines for PANS and PANDAS in the UK has made assessment, diagnosis and treatment difficult for people with the conditions to access.
PANS PANDAS UK and the PANS PANDAS Steering Group are delighted that work to develop UK guidelines began in April 2024 with guidance from the Royal College of Paediatrics and Child Health.
As part of the process of developing guidelines, the Guideline Development Group look first to see what recommendations they are able to make based on published research. Because PANS and PANDAS were only identified relatively recently, the research literature is still evolving and there are some gaps in evidence. In areas where this is the case, the guidelines team will look to clinical and patient experts* to reach an agreement based on their knowledge and experience.
*patient experts are people directly affected by PANS or PANDAS. This includes family members and carers, as well as those living with the conditions.
How you can help us
We are seeking expressions of interest from parents, carers and young people (aged 15 and over) to participate in a Delphi Process. This process is when we get the views of parents, patients, and healthcare professionals to reach a consensus for a guideline.
Find out more:
What is involved?
We will be asking Delphi panellists to respond to a short survey, with an estimated completion time of around 5-10 minutes. We anticipate that this will be emailed to participants in early December 2025. Panellists will be asked to complete the survey online within 4 weeks.
For each question we need to reach an agreement level between everyone answering the survey. If we don’t reach a set level, which is 75% agreement in answers, then we may need to re-word some of the statements and resend the survey.
Who can contribute?
It is really important that representatives from all the groups who will be affected by the new guidelines are involved in every stage of their development. As such, there is parent and young person representation on the guideline development group and there will also be parent and young people participation in the Delphi study.
All Delphi panellists will be acknowledged in the final published guidelines, unless they request otherwise.
In order to be a Delphi panel candidate in the parent/carer or young people group you must have experience of caring for a child or young person who lives with suspected or diagnosed PANS or PANDAS, or be a young person (over 15 years) who lives with suspected or diagnosed PANS and PANDAS.
How can I take part?
If you are keen to participate, please submit your expression of interest via this short form.
How many people can participate?
All eligible expressions of interest from parents and young people will form part of a pool of candidates from which three parents/carers and three young people will be randomly selected. Each group of stakeholders will be represented by three individuals which is why we will have three parents/carers and three young people with lived experience.
I still have questions…
To find out more about this project, please e mail katy.hindson@panspandasuk.org
