Research and Non Clinical Work

Dr Taylor is the Primary Investigator for the SCN1A Horizons Natural History Study in Leeds Children's Hospital and part of the project management and national steering committee. 

SCN1A-related epilepsy/Dravet syndrome in children and adults longitudinally over a period of three years. In addition, this study will compare missense and truncating genotypes in terms of i) rates of change of countable convulsive seizures per month and ii) neurodevelopmental outcome and trajectories.

If you are the parent of a child under-16 years of age and live in North, East or West Yorkshire and would like to discuss recruitment through Dr Taylor's NHS practice we would be keen to hear from you. 

Dr Taylor is the Primary Investigator for the UK Multicentre Study of Children with Opsoclonus Myoclonus Syndrome in Leeds Children's Hospital. The study is now closed but ongoing long-term follow-up continues. 

Opsoclonus myoclonus syndrome (OMS) is a rare disorder of the nervous system (incidence 1/5 million/year) with onset usually in the second year of life. It presents as jerky movements of the eye (opsoclonus) and body (myoclonus), with ataxia, irritability and sleep disturbance, and is associated with subsequent learning, movement and behavioural problems. About 50% of children with OMS have an underlying neuroblastoma and it seems likely that it is an immune-mediated, sometimes paraneoplastic, condition. Steroids, often supplemented with other immunosuppressants, are the primary treatment but there is limited evidence for drug choice and dosage and little knowledge of the relationship between early symptomatic response and later cognitive outcome. This study will examine drug response of OMS children, with and without Neuroblastoma.

Dr Taylor is the Primary Investigator for the Tapestry study in Leeds Children's Hospital. This is a study in conjunction with Parexal. 

The study is sponsored by UCB Biopharma.

Tapestry is a post-authorisation safety study collecting data from a registry of patients treated with Fintepla (Fenfluramine).The purpose of this NIS is to collect medical information about the safety of long-term utilization of Fintepla® including its risk of heart diseases, hypertension and low growth rate. The frequency of echocardiogram monitoring of participants will be collected.

Dr Taylor was the Primary Investigator for REVEAL-CP in Leeds Children's Hospital. This trial is now closed.

The study was sponsored by PTC Therapeutics. 

The aim of the study was to screen patients for AADC(Aromatic L-Amino Acid Decarboxylase) deficiency with CentoCard® – CENTOGENE’s CE-labelled dried blood spot collection kit – by evaluating blood samples for above normal levels of 3-OMD. Patients with elevated 3-OMD were tested for decreased levels of AADC enzyme activity and the presence of variants in the DOPA decarboxylase (DDC) gene. CENTOGENE and PTC aimed to shorten the diagnosis time for patients living with AADC deficiency and ultimately accelerate the discovery of potential treatment options for patients living with this rare genetic disorder.

Wassmer E, Billaud C, Absoud M, Abdel-Mannan O, Benetou C, Cummins C, Forrest K, De Goede C, Eltantawi N, Hickson H, Hussain N, Jardine P, Livingston JH, Mordekar S, Ramdas S, Taylor M, Vijayakumar K, West S, Whitehouse WP, Kneen R, Hemingway C, Lim M, Hacohen Y, Wright S; PUDDLS STUDY GROUP. Long term outcome in non-multiple sclerosis paediatric acquired demyelinating syndromes. Eur J Paediatr Neurol. 2024 Jul 6;52:52-58.

Sabanathan S, Abdel-Mannan O, Mankad K, Siddiqui A, Das K, Carr L, Eltze C, Eyre M, Gadian J, Hemingway C, Kaliakatsos M, Kneen R, Krishnakumar D, Lynch B, Parida A, Rossor T, Taylor M, Wassmer E, Wright S, Lim M, Hacohen Y. Clinical features, investigations, and outcomes of pediatric limbic encephalitis: A multicenter study. Ann Clin Transl Neurol. 2022 Jan;9(1):67-78. doi: 10.1002/acn3.51494. Epub 2022 Jan 11. 

Ray STJ, Abdel-Mannan O, Sa M, Fuller C, Wood GK, Pysden K, Yoong M, McCullagh H, Scott D, McMahon M, Thomas N, Taylor M, Illingworth M, McCrea N, Davies V, Whitehouse W, Zuberi S, Guthrie K, Wassmer E, Shah N, Baker MR, Tiwary S, Tan HJ, Varma U, Ram D, Avula S, Enright N, Hassell J, Ross Russell AL, Kumar R, Mulholland RE, Pett S, Galea I, Thomas RH, Lim M, Hacohen Y, Solomon T, Griffiths MJ, Michael BD, Kneen R; CoroNerve study group. Neurological manifestations of SARS-CoV-2 infection in hospitalised children and adolescents in the UK: a prospective national cohort study. Lancet Child Adolesc Health. 2021 Sep;5(9):631-641. doi: 10.1016/S2352-4642(21)00193-0. Epub 2021 Jul 15. Erratum in: Lancet Child Adolesc Health. 2021 Sep;5(9):e38. doi: 10.1016/S2352-4642(21)00238-8. Erratum in: Lancet Child Adolesc Health. 2021 Dec;5(12):e46. 

Dr Taylor was invitied by UCB Pharmaceutical to deliver a medical symposium at the British Paediatric Neurology Association Annual Conference 2024 on 'Who care of DEEs (Developemental Epileptic Encephalopathies)?'

Dr Taylor has been invited by Jazz Pharmaceuticals as a speaker for the Epilepsy DiaLoGs meeting in November 2024