Evelina London Children’s Hospital is part of the Guy’s and St Thomas’ Hospital Trust and is the hub for providing tertiary level neuromuscular care to children and young people in the South East Thames region of England. The hospital offers comprehensive diagnostic and management services for people with neuromuscular disorders, from antenatal diagnosis through to childhood, into adolescence and, through formal links with the services at St Thomas’ Hospital and our health partners, King’s College hospital, on into adult life. The Neuromuscular service operates a number of regional clinics to take care closer to home where possible.
Children's services at Evelina London are mainly located in our state-of-the-art building alongside St Thomas' Hospital. The full range of paediatric, community and neonatal sub-speciality services, necessary for the delivery of holistic care to children with neuromuscular disorders, are provided at Evelina London Children’s Hospital and support our service and ethos of multi-disciplinary care.
The Neuromuscular service is embedded in the Neurosciences service which sees over 800 acute inpatient admissions per year and over 150 day cases. Approximately 2000 new and 4000 follow-up cases are seen in the Neuroscience outpatient’s service (including regional clinics).
The neuromuscular service provides a regional diagnostic and management service for around 800 children with peripheral neuromuscular disorders. This is a predominantly outpatient based service provided according to a multidisciplinary model and with on-site support from all necessary medical and surgical services.
Currently, we look after 91 boys with Duchenne Muscular Dystrophy and 34 children with Spinal Muscular Atrophy.
The service works closely with the Adult Neuromuscular Services at St Thomas’ and King’s College Hospital and the nationally renowned Lane Fox Respiratory Unit at St Thomas’ Hospital, to ensure a smooth transition for adolescents moving to adult services.
The Children’s Neuromuscular service is a leading centre for research into the clinical and genetic characterisation of inherited neuromuscular conditions. They work closely with King’s College London, and with national and international research networks to investigate the causes of neuromuscular disorders, in order to identify cures.
The neuromuscular service is supported by spinal, orthopaedic, intensive care (paediatric and neonatal), endocrine, cardiology and respiratory services at Evelina Children’s Hospital.
We also have access to the state-of-the-art NIHR Clinical Research Facility, co-located at St Thomas' Hospital site.
Our team has been an active member of NorthStar Clinical Network since its inception and currently has 86 of our 91 DMD patients recruited into the NorthStar database – the 4th highest amongst the members.
Paediatric Neuromuscular department,
Level 2, Becket House,
Evelina London Children’s Hospital,
Westminster Bridge Road,
London SE1 7EH
|Study Name||Trial Status at London - Evelina||Overall Trial Status|
|Phase 3 PolarisDMD Trial [TERMINATED]||Trial complete/terminated||Trial terminated|
|Patient Registry Translarna (Ataluren)||Fully recruited||Fully recruited|
|Wave Life Sciences Exon 51||Trial complete/terminated||Trial complete|
Dr Vasantha Gowda is a Consultant Paediatric with neuromuscular expertise based at Evelina London Children’s Hospital, which is one of the four centres designated by NHSE for gene therapy treatment for children with Spinal Muscular Atrophy. She has an honorary appointment as a Senior Clinical Lecturer at the Faculty of Life Sciences and Medicine, King’s College.
She has served as the lead for Post-graduate medical education for paediatric neurosciences for 5 years. She has organized well attended paediatric neuromuscular study days for paediatricians and allied health professionals. With a back ground of Masters in Evidence Based Health-Care from the University of Oxford, she takes a keen interest in clinical research and serves as the co-lead for neurosciences clinical trials at Evelina London Children’s Hospital. She has successfully conducted several clinical trials as the principal/chief investigator. She is a part of the SMAREACH steering committee, which oversees data collection and monitoring for patients with Spinal Muscular Atrophy in the UK. She is a member of the Cellular, Genomic and Regenerative Medicine Board, ATMP Working Group, and the Research and Development Biological Safety Committee at the Guy’s and St. Thomas’ NHS Foundation Trust. She serves as the Regional Lead for the Royal College for Paediatric and Child Health.
Heinz Jungbluth is Professor of Paediatric Neurology at King’s College and a Consultant Paediatric Neurologist at the Evelina Children’s Hospital, Guy’s & St Thomas’ NHS Foundation Trust, London. He runs specialist clinics for children and adolescents affected by neuromuscular and neurological disorders and has more than 20 years of clinical experience in the neuromuscular field. His main research interest is in neurogenetics, in particular the genetics of early-onset neuromuscular and neurodevelopmental disorders. He has published more than 150 peer-reviewed papers and has authored several chapters in key neurological and neuromuscular textbooks. He is a member of various editorial boards, as well as National and International Expert Consortia, concerned with improving the care and developing therapies for patients affected by neuromuscular disease.
I currently work in the Wolf Clinical Research Facility at the Evelina London Children’s Hospital (ELCH) as a paediatric research nurse.
I qualified as a nurse in 2015 and worked on a neonatal intensive care unit in Melbourne, Australia before moving to the UK in 2017. I began working in paediatric research soon after moving to the UK and have worked on multiple early phase research studies across a wide range of specialties.
My current role at ELCH is focused on managing various aspects of the paediatric neurology trial portfolio which includes a number of DMD trials. My responsibilities in this role are multifaceted and range from setting up trials to delivering them directly to our patients.
I qualified as a Paediatric Nurse in 2015. After qualifying I spent a few years working as a nurse in a busy Paediatric Emergency Department before recently transitioning into Paediatric Research.
My current role at ECLH is focused on managing various aspects of the Paediatric Neurology Portfolio.
Clara graduated from King’s College London in 2012 and completed her rotations at North Middlesex Hospital. In October 2019, she joined the Neuromuscular Team at the Evelina London Children’s Hospital, as the Research Neuromuscular Physiotherapist funded by the DMD Hub. She supports the Neuromuscular Multidisciplinary clinics which take place weekly and takes part in the research trials.
Jennie is a chartered and state-registered physiotherapist with many years of experience in paediatrics. She has worked for most of her career in paediatric neuromuscular disorders, working at a number of specialist centres, including The Hammersmith Hospital with Professor Dubowitz, then Professor Muntoni. When working at Guys Hospital, she was involved in both the Paediatric and Adult Neuromuscular clinics. For the last 11 years, she has been at The Evelina London Children's Hospital. She also has experience as a Paediatric Community Physiotherapist, and is therefore very aware of the challenges that are met by therapists working in different environments.
She works as part of the MDT team at The Evelina London, carrying out standardised assessments, providing clinical management and advice to families and local physiotherapists. She also works closely with the orthopaedic and respiratory physiotherapy teams, and the orthotists.
Jennie was one of the developers of the NorthStar Ambulatory Assessment for DMD, which after publication, became widely recognised and adopted as the standardised assessment of choice for many research studies in DMD, both nationally and internationally, and is also an essential part of the North Star national database. She is the physiotherapy representative on the National North Star Steering Committee.
Jennie has been involved in a number of research projects and publications - the most recent being the national study on hydrotherapy in DMD, as the independent assessor of prescription suitability and compliance. She has set-up, and continued to run, the South East Physiotherapy Network for NMD. She is a member of APCP and the APCP Neuromuscular group, and was previously a Committee member.
Jennie is the lead for a small team of specialist physiotherapists in Neuromuscular Disorders at Evelina London.