Jay Shetty's research focuses on the long term outcome in childhood epilepsy, neuro-inflammation, Central Nervous System infections and rare disease clinical trials. Dr Jayakara (Jay) Shetty Consultant Paediatric Neurologist, NRS Fellow, Honorary Senior Lecturer and CLaH Module Organiser Child Life and Health Contact details Work: +44 (0)131 312 1651 Email: Jay.Shetty@ed.ac.uk BiographyJay is a consultant paediatric neurologist with clinical expertise in childhood onset epilepsy (epilepsy surgery, long term EEG monitoring, SEEG) and paediatric neuroinflammatory disorders. His research focus includes childhood onset epilepsy, digital innovation and clinical trials. He is active in teaching and supervision for undergraduate and postgraduate programs at the University of Edinburgh Medical School.Consultant Paediatric Neurologist- Royal Hospital for Children and Younge People, EdinburghConsultant for Scottish Paediatric Epilepsy Surgery ProgramNRS Fellow- CSO Scotland (2015-18) & NRS Clinician -NHS Lothian R&D (2018-present)Child Life and Health UG Program Director, Edinburgh Medical SchoolHonorary Reader, CLAH, CIR, University of EdinburghBackgroundMB BS- Mysore Medical College, University of Mysore, IndiaMRCPCH (2005) and FRCPCH (2012)- Royal College of Paediatrics and Child Health, LondonResearch Fellow for WHO and Indian Council of Medical Research- All India Institute of Medical Sciences, New DelhiPaediatric Training -South East Scotland and Leeds Teaching HospitalsEpilepsy Research Fellow- Ninewells Hospital and Medical School, DundeeClinical Lecturer in Child Health- Dundee Medical School, University of DundeePaediatric Neurology Specialist Training - Dundee and EdinburghOther responsibilities and affiliationsResearch committee member and BPNA-RCPCH lead- British Paediatric Neurology AssociationRoyal College of Paediatric and Child Health Research Consultation Committee memberChair, SIGN Guideline for Paediatric EpilepsyNeuroscience Expert Group member, Connect4children, European clinical trial networkSteering Group Member, Scottish Paediatric Epilepsy Network Group membersCurrent research teamIva Peh, Research Assistant including PPIE workSarah Churchward, Data Science and Epilepsy Database ManagerMegan Hutchison, Clinical traineeEmily Lancastle, Clinical traineePrithi Natarajan, Clinical traineeTheresa Peltz, Clinical traineeNiamh Rafferty, Clinical traineeJemima Alston, Undergraduate Medical studentAndrea Chen, Undergraduate Medical studentGrace Wang, Undergraduate Medical studentUndergraduate students from Edinburgh University Neurological Society - Epilepsy databasePostgraduate students Gemma Buxton, additional MD supervisorHannah Gofton, additional PhD supervisorFrancesca Pentimalli Biscaretti Di Ruffia, Translational Neuroscience PhD student (mini project)Previous UG studentsBMS research projects completed: Libby Chatterton Dickson, Josh Paul, Jess Yu, Eilidh Lindsay, Jemima Alston, Logan Vavangas, Charlotte Blackery, Ellie GillonEpilepsy Database: Ailidh RamsayResearch interestsStudying outcomes of epilepsy and other neurological disorders to provide personalised information to patients and their familyCollaborating to develop innovative technology that improves diagnosis and careTesting novel treatments available through clinical trials (Epilepsy, Paediatric onset MS, Rett Syndrome and Type1 interferonopathy)Key projectsEdinburgh Paediatric Epilepsy Cohort (EPEC)Childhood epilepsies are one of the most common chronic neurological disorders and in Scotland, 5000-7000 young people, are estimated to have active epilepsy. When a child is diagnosed with epilepsy, the focus is on seizure management. Apart from the seizures, there are other significant factors in childhood epilepsies including: learning and behavioural problems, psychiatric co-morbidities, risk of injury, side effects of antiepileptic drugs, impact on quality of life, impact on future employment and risk of mortality.Jay has developed a comprehensive epilepsy database, covering the last 15 years, including data on clinical information, neuroimaging, neurophysiology, neurodevelopment, educational progress, treatment response and other routinely collected data. Further data exploration will examine data linkage and data driven innovations through the EPEC cohort.Digital InnovationJay has been working in collaboration with academic colleagues (Dr Javier Escudero Rodriguez, School of Engineering and Dr Alfredo Gonzalez-Sulser, Centre for Discovery Brain Sciences), patient representatives and organisations (UK Infantile Spasms Trust and Epilepsy Scotland) and colleagues from the department of paediatric neurosciences to develop a digital solution to improve early seizure detection in infants. The team’s current focus is on Infantile Epileptic Spasms Syndrome EEG detection using AI, and to develop a remote EEG solution for diagnosis and treatment monitoring. This work will expand to other epilepsies and the team recently received a substantial grant for this research.Jay is also collaborating with the Glasgow Neurosciences Research Group and the vCreate innovation team on their digital innovation research using carer recorded videos.Clinical trialsA Novel, Regulated Gene Therapy (NGN-401) Study for Females With Rett Syndrome, NCT05898620, Sponsor Neurogene Inc. Principal Investigator Edinburgh (for trial related questions please contact Loth.RTT200@nhs.scot)A Study to Test How Well BI 3000202 is Tolerated by People With Type 1 Interferonopathies, NCT06878365, Sponsor Boehringer Ingelheim. Principal Investigator Edinburgh (to start soon)A Study to Evaluate Safety and Efficacy of Ocrelizumab in Comparison With Fingolimod in Children and Adolescents With Relapsing-Remitting Multiple Sclerosis (RRMS) (Operetta 2), NCT05123703 Sponsor: Roche. Principal Investigator EdinburghANAVEX2-73 Study in Pediatric Patients With Rett Syndrome (EXCELLENCE), NCT04304482, Sponsor Anavex Life Sciences Corp. Principal Investigator EdinburghSafety and Efficacy of Fingolimod in Pediatric Patients With Multiple Sclerosis, NCT01892722, Sponsor Novartis Pharmaceuticals. Principal Investigator Edinburgh and UK Chief Investigator for the long term safety extension study.A Study of TEV-50717 (Deutetrabenazine) for the Treatment of Dyskinesia in Cerebral Palsy in Children and Adolescents (RECLAIM-DCP), NCT03813238, Sponsor: Teva Branded Pharmaceutical Products R&D, Inc. Principal Investigator EdinburghPharmacological Management of Seizures Post Traumatic Brain Injury (MAST), NCT04573803, Sponsor Cambridge University Hospitals NHS Foundation Trust, NIHR Funding. Paediatric Principal Investigator EdinburghInvestigating the Role of Early Intravenous Immunoglobulin Treatment for Children With Encephalitis (IgNiTE), ClinicalTrials.gov ID NCT02308982, Sponsor University of Oxford. Principal Investigator, EdinburghA Multicentre randomiSed Controlled TRial of IntraVEnous Immunoglobulin Versus Standard Therapy for Transverse Myelitis (STRIVE), ClinicalTrials.gov ID NCT02398994, Sponsor Guy's and St Thomas' NHS Foundation Trust. Principal Investigator, EdinburghAntiepileptic Efficacy Study of GWP42003-P in Children and Young Adults With Dravet Syndrome (GWPCARE1), ClinicalTrials.gov ID NCT02091375 Sponsor Jazz Pharmaceuticals. Sub- Principal Investigator, EdinburghSANAD2 trial in epilepsy. ISRCTN registry, 30294119, Sponsor, University of Liverpool & Walton Centre, Sub- Principal Investigator, EdinburghInhibition of Reverse Transcription in Aicardi-Goutières Syndrome (AGS-RTI), ClinicalTrials.gov ID NCT04731103, Sponsor University of Edinburgh. Sub-Principal Investigator, Edinburgh An Open-Label Study to Investigate the Safety of Single and Multiple Ascending Doses in Children and Adolescents With Dravet Syndrome, ClinicalTrials.gov ID NCT04442295, Sponsor Stoke Therapeutics, Inc. Sub-Principal Investigator, Edinburgh Prophylactic Antibiotics To Prevent Chest Infections in Children with Neurological Impairment ISRCTN71955516. Sponsor, University of Liverpool & Walton Centre, Sub- Principal Investigator, EdinburghLocal investigator and collaborator for research studies Neurodevelopmental outcome in early onset epilepsy (NEUROPROFILES Study). Professor Chin, EdinburghGenetic and Autoimmune Epilepsy Study- Professor Zuber, GlasgowSleep and Epilepsy study, Dr Don Urquhart, EdinburghStratification of childhood epilepsy through detailed phenotyping and whole genome sequencing to identify novel genetic aetiologies and genetic modifiers of treatment response. Professor Zuberi and Dr Symonds, GlasgowEPISCOT study - Dr Symonds, GlasgowInstitute of Child Health and Great Ormond Street Children’s Hospital London Neuroscience Research Team - Multicenter Epilepsy Lesion Detection project and UK Stereotactic EEG studyEnterovirus D 68 associated Acute Flaccid Myelitis- EU Collaboration. Professor H.G.M. (Bert) Niester and Dr Jelte HelfferichFundingNRS Career Researcher Fellowship funding ~£25K/Year (2015-ongoing)-PIClinical trial funding (3-NIHR and 6-Commercial)- Collaborating local PICharity Funding for Epilepsy Research (UKIST & ECHC) £23K- 2025-26-PIMRC Harmonised IAA, UoE- £60K (2024-25)- Co-applicant, PI- Dr Javier Escudero RodriguezMRC UK Grant, £1.7 Million- Inhibition of reverse transcription in type I interferon mediated neuropathology. (2019-24)- Co-applicant, PI-Professor Yanick CrowERUK Grant, Digital innovation of video diagnosis in epilepsy evaluation. £49,726 -2021-22. Co-applicant, PI- Professor Sameer Zuberi, GlasgowAction Medical Research Grant, £43,868, 2017-03 to 2019-03). Study of Sleep and Epilepsy in Children. Co-applicant, PI- Dr Don UrquhartPublications Full publications listing - ORCID This article was published on 2024-09-10