PANS PANDAS UK

James Lind Alliance Priority Settings Workshop

James Lind Alliance Priority Settings Workshop

We are delighted to have been part of such an important research priority setting workshop today. This event, organised by the James Lind Alliance and the British Paediatric Neurological Association, sought to identify the most important unanswered questions for research in childhood neurological conditions.

Bringing in the voice of the patients, carers and clinicians is key in ensuring the most important questions are answered in this research area and we thrilled to have been there to represent the PANS community in the UK.

We cannot say much about the outcomes of the workshop just yet but look forward to updating you all once the steering group has completed the next stage of the process.

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Glossary

  • ADHD
    Attention Deficit Hyperactivity Disorder
  • AE
    Auto-immune Encephalitis
  • ARFID
    Avoidant Restrictive Food Intake Disorder
  • ASD
    Autism Spectrum Disorder
  • CAMHS
    Child and Adolescent Mental Health Service
  • CBT
    Cognitive Behavioural Therapy
  • Dysgraphia
    difficulty writing by hand
  • EHCP
    Education, Health and Care Plan
  • Emotional Lability
    Rapid, and dramatic changes in mood (for example uncontrollable laughter to crying)
  • Enuresis
    wetting
  • GAS
    Group A Streptococcal infection
  • NHSE
    NHS England
  • NICE
    National Institute for Health and Care Excellence
  • OCD
    Obsessive Compulsive Disorder
  • PP
    PANS PANDAS
  • PPUK
    PANS PANDAS UK
  • PPN
    PANS Physicians Network
  • PPSG
    PANS PANDAS Steering Group
  • SENCo
    Special Educational Needs Coordinator
  • SIGN
    Scottish Intercollegiate Guidelines Network to the glossary
  • Tic
    Sudden repetitive movement (motor tic) or sound (vocal tic) which is difficult or impossible to control