Richard Chin studies the clinical and epidemiological aspects of childhood status epilepticus and childhood epilepsy. Professor Richard Chin Professor of Paediatric Neurology and Clinical Epidemiology Child Life and Health Centre for Clinical Brain Sciences Muir Maxwell Epilepsy Centre Contact details Website: Academic Profile Email: r.chin@ed.ac.uk Group Members Gashirai Mbizvo Rebecca Parry Julie Woodfield Michael Yoong Kari Aarberg Matthew Hunter Suresh Pujar Marina Martinos Background Epilepsy, which is amongst the five most common neurological conditions globally, affects an estimated 50 million people of all ages worldwide. Between 1 child per 100 children and 1 per 200 children have epilepsy. Despite developments in technology and science, the cause of epilepsy remains unknown in approximately 70%. Early detection and early intervention of the associated learning and behavioural problems (that can be present in 80%) are often missed. Thirty percent of children with epilepsy have seizures that do not respond to all currently available treatment options. The aim of my group is to use a multidisciplinary approach is to address these three main areas of clinical need in epilepsy: identify causes, methods for early detection of comorbidities, and novel treatment strategies. My research interests are in the clinical and epidemiological aspects of childhood status epilepticus and childhood epilepsy. My PhD at UCL focussed on the epidemiology of childhood status epilepticus. The findings showed that the incidence was higher, the aetiologies were different with fever being the most common cause, mortality was higher in children compared to adults. The findings also identified the importance or pre-hospital treatment in shortening the duration of seizures and the role of lower socioeconomic risk in children who lived in more socioeconomically deprived areas. This work has lead to a number of policy changes to ambulance services, national and international guidelines for the management of status epilepticus along with the development of novel pre-hospital treatment strategies. Together, these developments are widely thought to be at least partly responsible for the decreased morbidity and mortality associated with status epilepticus. Following my PhD I became an NIHR Clinical Academic Lecturer and then Clinician Scientist at UCL/Great Ormond Street Hospital. My work during this period focused on using data from the 1958 cohort study to investigate the long term outcomes of childhood epilepsy, and use of The Health Improvement Network (THIN) GP database to examine the trends in the incidence of childhood epilepsy. We demonstrated that problems with childhood onset epilepsy extend into adulthood, irrespective of aetiology of the epilepsy or seizure outcome. The study showed poorer socioeconomic outcomes compared to the general population highlighting the need for continued support into adulthood beyond just seizure control. Using the THIN database I showed the validity and utility of using administrative data to study epilepsy, and that there was a decreasing incidence of childhood onset epilepsy which contributed to the emerging data of decreasing incidence in Europe. These findings suggested epilepsy policies were being effective and provided essential data for sample size determination for contemporary epilepsy studies, and resource allocation. In 2011, I joined the University of Edinburgh as a Senior Research Fellow and Director of the philanthropically supported Muir Maxwell Epilepsy Centre. Research Overview The overarching goal of my research is to reduce the risk of developing epilepsy and to improve the lives of children with epilepsy. I use epidemiological methods and a life course approach to understand typical and atypical human brain development, and for investigating clinical, biological and socioeconomic risk and resilience factors for epilepsy and its associated neurological, psychiatric and medical comorbidities. My current main research areas are: Childhood status epilepticus With collaborators, I am providing evidence that challenge the long-standing view that prolonged febrile seizures in children lead to mesial temporal sclerosis and temporal lobe epilepsy. We are showing that the association is actually uncommon and that the longitudinal MRI changes are not consistent with a trajectory favouring the long-standing hypothesis. These data suggest that alternative hypotheses for the mechanism for mesial temporal sclerosis require exploration instead. Cohort studies and administrative data for epilepsy research More recently I have established a unique world-first nested epilepsy cohort (EPYC) within the largest birth cohort world-wide (MoBa), and am co-founder of a novel population-based study of epilepsy in school-aged children (CHESS). Through data from both I have been providing evidence that epilepsy is much more than seizures, with a myriad of co-morbidities, many of which are independent of seizure control. These studies have contributed to a substantial shift internationally towards development and implementation of methods of early and accurate detection of such problems, and management strategies. I have set up NEUROPROFILES, a novel population-based cohort of preschool children with newly diagnosed epilepsy which is already showing that cognitive/ behavioural impairments are detectable in 50% of preschool children with epilepsy with novel potential eye-tracking, EEG, and MRI biomarkers for impairment. Sources of Funding Norwegian Research Council: Chin RF, Stoltenberg C (co-PI), Magnus P, Cortina-Borja M, Suren P, Skrondal A, Oyen A, Scott RC. Epilepsy in young children a study based on the Norwegian mother and child cohort (MoBa). NOK 6,588,000 (approx £750,000): 2012 - 2017. Wellcome Trust: Chin RF (ECAT Lectureship for Dr. Julie Woodfield). MRI features and cognition in children with epilepsy. £220, 979. 2014-2017 Epilepsy Research UK: Chin RF (PI), Duncan S (co-PI). A retrospective case-control study of epilepsy related deaths in Scotland between 2009-2014. £143,872. 2016-2018 Waterloo Foundation: Chin RF. A UK birth cohort study of temporal trends in the incidence of Rolandic Epilepsy, and the influence of age, gender, socioeconomic status. £37,912. 2017-2018. NHS Research Scotland (Clinical Lectureship): Chin RF. Longitudinal quantitative MRI in preschool children with newly diagnosed epilepsy. £248,000: 2013-2016 Muir Maxwell Trust: Chin RF, McLellan A, Verity K, Sumpter R. Neurocogntive and behavioural problems in preschool children with epilepsy in Fife and Lothian (NEUROPROFILES). £100,000: 2012-2015 RS McDonald Trust: Chin RF, Harden J. The impact of early onset epilepsy on the parents and siblings of affected children. £60,000: 2012-2015 Wellcome Trust/Academy of Medical Sciences/BUPA Foundation: Chin RF, Scott RC, Clark C, Neville BG, Chong WK, Gillberg C. The prevalence, nature and spectrum of morbidities, outcomes and their structural substrates 5-10 years following convulsive status epilepticus in childhood. £229,000: 2010-2013 Simons Foundation: Kind P (PI), Chin RF (one of 10 co-Is). Simon’s Initiative for the Developing Brain. £20Million. 2017-2022 Their World. Boardman J (PI), Chin RF (one of 27 co-Is). The Edinburgh Birth Cohort. £1.5Million. 2016-2021. Action Medical Research: Urquhart D (PI), Chin RF (one of 4 co-Is). Sleep in Children with Epilepsy. £43,868. 2016-2018 Epilepsy Action: Duncan S (PI), Chin RF and Macleod M. A systematic review of epilepsy related deaths – incidence, spectrum and risk factors. £8700 (2015-2017). Norwegian Research Council Fellowship: Aaberg H (PI), Chin RF (sponsor). Clinical characteristics and prenatal risk factors for epilepsy: a registry and birth cohort study. £180,000: 2014- 2017. Department of Health/MRC and ESRC: Dezateux C (PI), Chin RF (one of 24 co-Is). The Life Study. £35 million (2011-2015) Esmee Fairburn Trust: Neville B (PI), Chin RF (one of 4 co-Is). Cognitive and Behavioural impairments in Children with Epilepsy in Surrey Schools (CHESS). £160,000: 2009 - 2013 The Wolfson Foundation: Neville BG, Cross JH, Scott RC, Das KB, Chin RF. Education and children with epilepsy. £500,000: 2012-2015 Selected Publications Pujar SS, Martinos MM, Cortina-Borja M, Kling Chong WK, De Haan M, Gillberg C, Neville BGR, Scott RC, Chin RF; North London Epilepsy Research Network. Long-term prognosis after childhood status epilepticus: a prospective cohort study. Lancet Child and Adolescent Health (In press) Martinos MM, Pujar SS, Gillberg C, Cortina-Borja M, Neville BGR, De Haan M, Scott RC, Chin RF. Dev Med Child Neuro (In Press) Aaberg KM, Surén P, Søraas CL, Bakken IJ, Lossius MI, Stoltenberg C, Chin RF. Seizures, syndromes, and etiologies in childhood epilepsy: The International League Against Epilepsy 1981, 1989, and 2017 classifications used in a population-based cohort. Epilepsia. 2017 Sep 26. doi: 10.1111/epi.13913. [Epub ahead of print] PubMed PMID: 28949013. Aaberg KM, Gunnes N, Bakken IJ, Lund Søraas C, Berntsen A, Magnus P, Lossius MI, Stoltenberg C, Chin RF&, Surén P&. Incidence and Prevalence of Childhood Epilepsy: A Nationwide Cohort Study. Pediatrics. 2017 May;139(5). pii: e20163908. doi: 10.1542/peds.2016-3908. Epub 2017 Apr 5. PubMed PMID: 28557750. (&Joint Senior Author) Pujar SS, Seunarine KK, Martinos MM, Neville BGR, Scott RC&, Chin RFM&, Clark CA&. Long-term white matter tract reorganization following prolonged febrile seizures. Epilepsia. 2017 May;58(5):772-780. doi: 10.1111/epi.13724. Epub 2017 Mar 23. PubMed PMID: 28332711; PubMed Central PMCID: PMC5484997. (&Joint Senior Author) Devinsky O, Cross JH, Laux L, Marsh E, Miller I, Nabbout R, Scheffer IE, Thiele EA, Wright S; Cannabidiol in Dravet Syndrome Study Group.. Trial of Cannabidiol for Drug-Resistant Seizures in the Dravet Syndrome. N Engl J Med. 2017 May 25;376(21):2011-2020. doi: 10.1056/NEJMoa1611618. PubMed PMID: 28538134. Fehr S, Wong K, Chin RF, Williams S, de Klerk N, Forbes D, Krishnaraj R, Christodoulou J, Downs J, Leonard H. Seizure variables and their relationship to genotype and functional abilities in the CDKL5 disorder. Neurology. 2016 Nov 22;87(21):2206-2213. Epub 2016 Oct 21. PubMed PMID: 27770071. Aaberg KM, Bakken IJ, Lossius MI, Lund Søraas C, Håberg SE, Stoltenberg C, Surén P, Chin RF. Comorbidity and Childhood Epilepsy: A Nationwide Registry Study. Pediatrics. 2016 Sep;138(3). pii: e20160921. doi: 10.1542/peds.2016-0921. Epub 2016 Aug 1. PubMed PMID: 27482059. Lam WW, Millichap JJ, Soares DC, Chin R, McLellan A, FitzPatrick DR, Elmslie F, Lees MM, Schaefer GB; DDD study., Abbott CM. Novel de novo EEF1A2 missense mutations causing epilepsy and intellectual disability. Mol Genet Genomic Med. 2016 Apr 3;4(4):465-74. doi: 10.1002/mgg3.219. eCollection 2016 Jul. PubMed PMID: 27441201; PubMed Central PMCID: PMC4947865 Tonberg A, Harden J, McLellan A, Chin RF, Duncan S. A qualitative study of the reactions of young adults with epilepsy to SUDEP disclosure, perceptions of risks, views on the timing of disclosure, and behavioural change. Epilepsy Behav. 2015 Jan;42:98-106. doi: 10.1016/j.yebeh.2014.11.018. Epub 2014 Dec 12. PubMed PMID: 25506792. Ferro MA, Chin RF, Camfield CS, Wiebe S, Levin SD, Speechley KN. Convulsive status epilepticus and health-related quality of life in children with epilepsy. Neurology. 2014 Aug 19;83(8):752-7. doi: 10.1212/WNL.0000000000000710. Epub 2014 Jul 18. PubMed PMID: 25037204; PubMed Central PMCID: PMC4150130. Reilly C, Atkinson P, Das KB, Chin RF, Aylett SE, Burch V, Gillberg C, Scott RC, Neville BG. Neurobehavioral comorbidities in children with active epilepsy: a population-based study. Pediatrics. 2014 Jun;133(6):e1586-93. doi: 10.1542/peds.2013-3787. PubMed PMID: 24864167. Meeraus WH, Petersen I, Chin RF, Knott F, Gilbert R. Childhood epilepsy recorded in primary care in the UK. Arch Dis Child. 2013 Mar;98(3):195-202. doi: 10.1136/archdischild-2012-302237. Epub 2013 Jan 23. PubMed PMID: 23343522. Martinos MM, Yoong M, Patil S, Chin RF, Neville BG, Scott RC, de Haan M. Recognition memory is impaired in children after prolonged febrile seizures. Brain. 2012 Oct;135(Pt 10):3153-64. doi: 10.1093/brain/aws213. Epub 2012 Sep 3. PubMed PMID: 22945967; PubMed Central PMCID: PMC3470707. Surén P, Bakken IJ, Aase H, Chin RF, Gunnes N, Lie KK, Magnus P, Reichborn-Kjennerud T, Schjølberg S, Øyen AS, Stoltenberg C. Autism spectrum disorder, ADHD, epilepsy, and cerebral palsy in Norwegian children. Pediatrics. 2012 Jul;130(1):e152-8. doi: 10.1542/peds.2011-3217. Epub 2012 Jun 18. PubMed PMID: 22711729; PubMed Central PMCID: PMC4074608. Pujar SS, Neville BG, Scott RC, Chin RF; North London Epilepsy Research Network. Death within 8 years after childhood convulsive status epilepticus: a population-based study. Brain. 2011 Oct;134(Pt 10):2819-27. doi: 10.1093/brain/awr239. Epub 2011 Sep 13. PubMed PMID: 21914715; PubMed Central PMCID: PMC3187542. Chin RF, Cumberland PM, Pujar SS, Peckham C, Ross EM, Scott RC. Outcomes of childhood epilepsy at age 33 years: a population-based birth-cohort study. Epilepsia. 2011 Aug;52(8):1513-21. doi: 10.1111/j.1528-1167.2011.03170.x. Epub 2011 Jul 18. PubMed PMID: 21762447 Chin RF, Neville BGR, Peckham C, Bedford H, Wade A, Scott RC, for the NLSTEPSS Collaborative Group. Treatment of childhood convulsive status epilepticus that has started in the community: prospective population-based study. Lancet Neurology 2008;7(8):696-703 Raspall-Chaure M, Chin RF, Neville BG, Scott RC. Outcome of paediatric convulsive status epilepticus: a systematic review. Lancet Neurol. 2006 Sep;5(9):769-79. Review. PubMed PMID: 16914405. Chin RF, Neville BG, Peckham C, Bedford H, Wade A, Scott RC; NLSTEPSS Collaborative Group. Incidence, cause, and short-term outcome of convulsive status epilepticus in childhood: prospective population-based study. Lancet. 2006 Jul 15;368(9531):222-9. PubMed PMID: 16844492. This article was published on 2024-09-10