Children with PANS or PANDAS can go from healthy to severely anxious, obsessive, or unable to eat almost overnight, yet many doctors have never heard of these conditions. This project will create the first comprehensive evidence and gap map (EGM)—an interactive, searchable catalogue of all published research on these disorders, covering diagnosis, treatment, symptoms, epidemiology, and patient experiences. The problem is that the existing evidence is scattered across hundreds of studies, many of them small or poorly controlled, making it nearly impossible for clinicians, researchers, or families to know what is actually known and what is not. Without a clear picture of the evidence base, research funding and clinical guidance remain fragmented, and patients continue to face delays in diagnosis and treatment. If this map succeeds, it will become a single authoritative reference point for everyone involved—from paediatric neurologists and psychiatrists to parents and teachers. By highlighting where evidence is strong and where gaps remain, the map will help direct future research toward the most urgent unanswered questions, such as which treatments work and how common these conditions truly are.
View original technical description
Evidence about the epidemiology, prevalence, treatment, and experiences of PANS/PANDAS: an evidence and gap map Scientific Abstract Introduction Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) are related disorders whereby young people experience sudden onset of physical and neuropsychiatric symptoms, often causing significant distress. PANS and PANDAS may persist for years in a relapsing-remitting course. Despite an increase in research about the conditions, awareness remains low and a fragmented evidence base currently hampers progress in the field and limits the support available for patients and their families. To our knowledge, there are no published EGMs on the topic of PANS and PANDAS. Whilst we know from initial scoping that published evidence on PANS and PANDAS is available, it is unclear at this point what the range, extent, and type of evidence there is and where the gaps in evidence are. Previous systematic reviews have identified a small number of RCTs of treatment options, and a much larger volume of evidence from non-randomised, or uncontrolled studies, across the domains of treatment, diagnosis, experiences, and epidemiology. This map will allow the categorisation and characterisation of empirical evidence on the topic. We will produce an interactive Evidence and gap map (EGM), collating and presenting all published empirical evidence about PANS/PANDAS. The EGM will be a single point of reference for those seeking information about PANS/PANDAS. It will be comprehensive and interactive, opening up the evidence to a range of audiences including patients, parents/carers, healthcare professionals, researchers and educational professionals. The EGM will be an important and necessary step to highlight and clarify gaps in the evidence, and to help direct future research about PANS/PANDAS. Methods We will comprehensively search in bibliographic databases with no date or language restrictions. We will also search relevant websites and perform author searches and forward and backward citation searching. We will search for any empirical evidence about PANS/PANDAS (or related terms CANS and PITANDS). Included studies will be coded and published in an EGM using EPPI-reviewer/mapper. We will sort studies by research topic (diagnosis, epidemiology, aetiology/pathophysiology, treatment, symptoms, access to services, experiences), and code details about study design, treatments, symptoms, professionals involved, study settings, equity considerations and participant characteristics. Screening and coding will be performed in duplicate. Throughout the review, we will engage with youth diagnosed with PANS/PANDAS, parents of children with the conditions, clinical experts and a senior representative from the PANS PANDAS UK charity. Dissemination The EGM will be shared widely with relevant organisations and professional bodies such as PANS PANDAS UK, the British Paediatric Neurology Association (BPNA), and the Royal College of Psychiatrists. The map will also be shared through various social media platforms such as LinkedIn and Bluesky. A link to the map will be made available on the Isca evidence web page. We will consult with our parent and youth groups and clinical interest holders to identify organisations/clinicians/working groups etc to share the map with and other dissemination outputs which may include plain language summaries, blogs etc. The EGM and accompanying report will be published in an academic journal.
Plain English summaries and category classifications on this site are generated by AI and may not perfectly reflect the original research.
Is something wrong? Let us know