Latest news
2026
The Isca Evidence team, funded by the NIHR Evidence synthesis programme, have completed the first stage of PANS PANDAS Unveiled, a multi-stage evidence synthesis project. PANS and PANDAS are severe complex medical conditions that affect the brain, usually resulting in a sudden onset of severe neurological, psychological and behavioural symptoms, mostly within children and young adults. There is a lack of awareness amongst healthcare, social work and education professionals in the UK and as a result the diagnosis, management and treatment of these conditions is challenging and the impact on those living with the conditions and their families is often life-changing, all-consuming and traumatic.
The PANS PANDAS Unveiled project aims to establish the current state of the evidence on PANS and PANDAS, highlight priorities for future research and provide a resource for a global audience in the form of an interactive Evidence and Gap Map (EGM).
The project and map were officially launched on 12th March in collaboration with the charity PANS PANDAS UK, reaching a global community. There has been a very positive response to the map and the project from parents and professionals alike; the number of unique visitors to the map now at almost 600. This response demonstrates a desire for more research and for greater understanding of PANS and PANDAS.
The EGM was created in collaboration with young people with the condition, parents, PANS PANDAS UK and clinicians. The EGM brings together and organises all empirical evidence on PANS and PANDAS for patients, families, clinicians, researchers and educators to use. Young people and parents were involved throughout the project from developing the protocol, naming the project, designing the framework and presentation of the map, helping to identify key concerns and collaborating on outputs to share the map and findings.
The map identified 445 studies, covering the topics of causes, diagnosis, symptoms, treatments and experiences. Less than 5% of the evidence was from the UK and whilst the map shows research activity has increased over recent years, much of the evidence consists of studies of lower scientific rigour (such as case studies). The map highlights the need for new primary research and evidence syntheses across all areas.
Stage 2 of the project, currently in the pipeline, involves targeted evidence syntheses:
- 2a: a qualitative systematic review exploring experiences
- 2b: a quantitative systematic review examining treatment effectiveness
PANS PANDAS Unveiled is feeding into the development of UK Guidelines, due to be released later in 2026.
To read the PANS PANDAS UK news story please click here. You can find all current project outputs for PANS PANDAS Unveiled here, and you can follow Isca Evidence on LinkedIn.
Two contract extensions worth over £1.6 million have recently been awarded, and will support the ongoing production of evidence syntheses to directly inform both health and social care delivery (HSDR Evidence Synthesis Centre) and national health and care policy (Exeter Policy Research Programme ERF). Recent reviews by these teams for NHS England and the DHSC have been on experiences of workforce reconfiguration during COVID19, and on Advanced Care Planning for people with learning disabilities.
On 24th February, Dr Simon Briscoe from the Exeter PRP Evidence Review Facility attended the Rare Disease Day 2026 parliamentary reception at the Palace of Westminster. Simon was invited in recognition of the team’s work on health inequities for people with a rare disease. Steve Race, MP for Exeter, also attended the event. The Exeter team’s work is cited in the latest England Rare Disease Action Plan as supporting the decision to include rare diseases in NHS England’s CORE20Plus5 framework.
To mark Rare Disease Day, Exeter PRP Evidence Review Facility members wore stripy zebra socks to support awareness and highlight the importance of thinking differently in healthcare.
The HOPE (Optimising Health Outcomes for PEople experiencing homelessness) team has put together a newsletter sharing progress to date, including an update on the Evidence and Gap Map (EGM), participatory systems mapping workshops and PPIE. Further information can be found on the website : Optimising health outcomes for people experiencing homelessness (HOPE) - PenARC or email HOPE@exeter.ac.uk
We are delighted to welcome Fatemeh Hosseini and Eugenie Evelynne Johnson to the PenTAG clinical reviewing team; we look forward to working with you both.
Work is well under way on a new NIHR funded project on ‘Optimising Health Outcomes for PEople experiencing homelessness’ – the HOPE Project. The team comprises Rebecca Abbott, Morwenna Rogers and Naomi Shaw together with colleagues from University of Exeter, Groundswell, Devon County Council and Clocktower Surgery.
The work will be carried out in three phases; firstly, the team will be producing an evidence and gap map, which will be an interactive online map of studies of interventions that have an impact on physical or mental health, or health care use by people experiencing homelessness.
Phase two will be a mixed methods review of qualitative and quantitative research on interventions that aim to facilitate appropriate attendance at emergency departments by people experiencing homelessness.
A third phase will be systems mapping and organising workshops to explore what works well, what the barriers are and what needs to be improved for people experiencing homelessness accessing emergency healthcare.
More information can be found at : Optimising health outcomes for people experiencing homelessness (HOPE) - PenARC