MDUK Oxford Neuromuscular Centre, University of Oxford

  • 13-Nov-2019

The MDUK Oxford Neuromuscular Centre (www.onmc.ox.ac.uk) was initiated through a partnership between Muscular Dystrophy UK and the University of Oxford. A 5-year Centre funding award from the charity and a significant investment from the university, have laid the grouds on which we are now building a centre of excellence for neuromuscular research and clinical trials. 

The Centre, established in January 2019, is located within the University of Oxford's Department of Paediatrics, and is a broad partnership across multiple departments of pre-clinical and clinical expertise. It builds on the already excellent neuromuscular disease research, training and patient care in Oxford, to drive the development of novel experimental medicines to impact neuromuscular diseases, developing enhanced clinical trial capacity in adults and paediatrics. The Centre is governed by a steering group of researchers all based a the University of Oxford: Professors Matthew J.A. Wood, Dame Kay E. Davies, Kevin Talbot, Laurent Servais and Georg A Hollander and managed by the Centre's project manager, Dr Jaclyn Nicole le Grand. 

Department of Paediatrics, Unviersity of Oxford

Oxford University Hospitals NHS Foundation Trust, John Radcliffe Hospital

The Department of Paediatrics was established in 1972 and is a part of the Medical Sciences Division.  The Department has a major interest in infectious and neuromuscular diseases on infancy and childhood and comprises clinical, teaching and research facilities within Oxford Children’s Hospital, the John Radcliffe Hospital’s Women’s Centre, the Institute of Molecular Medicine, the Peter Medawar Building, the Wellcome Trust Centre for Human Genetics (WTCHG), and the Centre for Clinical Vaccinology and Tropical Medicine (CCVTM).  The department currently employs around 160 clinical practitioners, research scientists and administrative staff and have an annual non-research turnover in excess of £6.5 million, with more than 120 active research grants.

For more information please visit: http://www.paediatrics.ox.ac.uk/  

The University of Oxford is a member of the Athena SWAN Charter and holds an institutional Bronze Athena SWAN award. The Department of Paediatrics holds a departmental silver Athena SWAN award in recognition of its efforts to introduce organisational and cultural practices that promote gender equality and create a better working environment for both men and women.

Oxford University Hospitals NHS Foundation Trust

Oxford University Hospitals NHS Foundation Trust (OUH) is a world renowned centre of clinical excellence and one of the largest NHS teaching trusts in the UK. It became a Foundation Trust on 1 of October 2015, enabling it to work more effectively in partnership with patients and the local community to provide high quality healthcare.

Adult and Paediatric Neuromuscular Services, Oxford University Hospitals

Patients with neuromuscular diseases have access to different clinical services integrated under the idea of excellence in care for neuromuscular disorders: the Oxford Motor Neuron Centre, the nationally funded Congenital Myasthenia Service, the Adult Muscle Service, the Peripheral and Pain Service, and the nationally funded Mitochondrial Service. All our services are centred at the John Radcliffe Hospital in Oxford. All services are funded by NHS England with support of the University of Oxford, and are associated with active translational research programmes.

The Paediatric Neuromuscular Service is based at Oxford Children’s Hospital. The team provides a regional neuromuscular service for surrounding counties including Oxfordshire, Buckinghamshire, Berkshire, Northamptonshire and parts of Wiltshire, Gloucestershire and Warwickshire. The team runs a one-stop multi-disciplinary clinic for children with neuromuscular disorders and has close links with the cardiology, respiratory, orthopaedic, spinal, neuropathology and radiology services to provide a comprehensive care. There is an established joint transition clinic with the Adult Muscle Service which comprises a specialist Neuromuscular Consultant, Specialist Clinical Research Physiotherapist, Neuromuscular Care Advisor, and MDUK funded Advocacy Officer.

Experience of running trials

The paediatric and adult neurology teams perform neuromuscular clinical trials and research with support from the NIHR Clinical Research Network coordinators and research nurses.

Current trial activities include:

  • Phase 3 DMD clinical trial run by Santhera (SIDEROS) – trial open and recruiting
  • Wave exon 51 skipping- trial due to open recruitment soon
  • Patient registry Translana (Ataluren)

Past neuromuscular trials in which Oxford has participated include:

  • LVJJ
  • DMD Heart Protection

Other relevant projects

Researchers and clinicians at the MDUK Oxford Neuromuscular Centre work on a range of neuromuscular diseases including motor neuron disease, muscular dystrophies, neuromuscular junction synaptophathies, peripheral neuropathies and spinal muscular atrophy. For more information about the neuromuscular research being carried out at the Universityy of Oxford, please visit our research page at: https://www.onmc.ox.ac.uk/research.

Through his affiliation in Belgium, Professor Servais is involved in the following trials:

  1. Wave phase 1 and 3
  2. Essence (Sarepta)
  3. Sunfish
  4. Rainbowfish
  5. Italfarmaco (Givinostat)
  6. Sideros
  7. Stive EU (Gene therapy trial Avexis)
  8. Sprint (Gene therapy trials Avexis pre-symptomatic patients)

Contact Information

Department Name
Department of Paediatrics, Unviersity of Oxford
Visit Us

Department of Paediatrics, University of Oxford
Level2, Oxford Children's Hospital
John Radcliffe Hospital
Headington
Oxford
OX3 9DU

Primary Email Address
childneuromuscular@ouh.nhs.uk
Primary Contact Person
Patients: Jenny Riga, jenny.riga@paediatrics.ox.ac.uk
Industry: Dr Jaclyn Nicole le Grand, nicole.legrand@paediatrics.ox.ac.uk
 
 
View Clinical Trials At This Site  
 
 


Current Trials:

Study Name Trial Status at MDUK Oxford Neuromuscular Centre, University of Oxford Overall Trial Status
TERMINATED: DYSTANCE 51 Trial complete/terminated Trial terminated
Santhera (SIDEROS) Recruiting Recruiting
 
 

Contact Listing:

Laurent Servais is a Professor of Paediatric Neuromuscular Diseases at the MDUK Oxford Neuromuscular Centre and Invited Professor of Child Neurology at Liège University.

After graduating from Louvain Medical School, Brussels, Belgium in 1999, he completed a PhD in Neuroscience (cerebellar electrophysiology in alert living mice) from Free University of Brussels, Belgium, followed by residencies in child neurology at the Free University of Brussels and Robert Debré Hospital, Paris. In 2008, he took a position in neuromuscular disease and clinical research at the Institute of Myology in Paris, where his interest and expertise in neuromuscular diseases flourished. He was subsequently appointed Head of Clinical Trials and Database Services. Most recently, he served as Head of the Institute of Myology’s I-Motion (Institute Of Muscle-Oriented Translational Innovation), and Head of the Neuromuscular Centre in Liège, Belgium. He has joined the MDUK Oxford Neuromuscular Centre and the University of Oxford as of September 2019.

Laurent has been involved as principal investigator in numerous clinical trials to test treatments for Duchenne muscular dystrophy and spinal muscular atrophy (SMA).

He is the leader of the newborn screening programme for SMA in southern Belgium where they are conducting a medico-economic analysis of newborn screening. His main research expertise covers the development of innovative outcome measures, including connected devices for real-life patients’ evaluation.

+44 01865 234248
laurent.servais@paediatrics.ox.ac.uk

Nicole is Project Manager of the MDUK Oxford Neuromuscular Centre at the University of Oxford, where she manages the Centre’s strategic projects, finances and communications as well as its academic and industrial relations.

She obtained her BSc, Cum Laude, in Biochemistry from the University of Ottawa, Canada and went on to complete her MSc in Neuroscience in the same institute.  Nicole gained her PhD from the Université de Franche-Comté, France in Biochemistry and then became a postdoctoral researcher at the University of Luxembourg. Her international research experience has focused on neurodegeneration and patient-derived induced pluripotent stem cells.

Nicole is an experienced scientific coordinator with a demonstrated history of working in higher education.  Skilled in project management, communications, life sciences and scientific writing. Nicole has a strong background in programme and project management within the field of translational medical research, previously managing H2020 and nationally funded projects focusing on Parkinson’s Disease at the Luxembourg Centre for Systems Biomedicine, University of Luxembourg.

+44 01865 (2)72128
nicole.legrand@paediatrics.ox.ac.uk

Sithara Ramdas has been a Consultant Paediatric Neurologist at Oxford Children’s Hospital since 2016, and Honorary Senior Clinical Lecturer with the University of Oxford since 2018. She completed her higher specialist training in Paediatric Neurology and sub-specialisation in neuromuscular disorders at the King’s College Hospital and the Evelina Children’s Hospital, London.

She undertakes full time clinical practice in Paediatric Neurology. Her areas of specialist interest are in Neuromuscular Disorders and Neuroimmunology. She leads a specialist Multi-disciplinary Paediatric Neuromuscular Clinic which is the regional neuromuscular service covering Oxfordshire, Northamptonshire, Buckinghamshire, Bedfordshire and Wiltshire.  She also works in the National Highly Specialised Service for Congenital Myasthenia Syndromes and Neuromyelitis Optica.

She leads the research and clinical trials in the paediatric neurology department.

01865234188
sithara.ramdas@ouh.nhs.uk

Jenny Riga is a clinical trial coordinator and manages a portfolio of studies at the MDUK Oxford Neuromuscular Centre.

She has extensive experience in clinical trial management having previously  held various roles including Research Assistant, Research Facilitator and Clinical Trials Manager at the Department of Primary Care Health Sciences, University of Oxford and Assistant Trial Manager on a large scale secondary care cardiovascular trial at the Diabetes Trials Unit, Radcliffe Department of Medicine, University of Oxford.

She has conducted qualitative interviews with patients and assisted senior researchers with literature reviews at the Health Experiences Research Group and the Primary Care Clinical Trials Unit, Department of Primary Care Health Sciences, University of Oxford. At the Primary Care Clinical Trials Unit, she has worked on infectious diseases Clinical Trials of Investigational Medicinal Products (CTIMPs) (ATAFUTI, ALIC4E, INVICTUS) and non-CTIMPs (PACE, TOAST, RIVET). She has also managed a programme of work on type 2 diabetes (SuMMiT-D); being responsible for the development of the protocol and internal operations, obtaining sponsor, ethics and local approvals, reporting to funders and successful recruitment and retention.

Jenny is particularly interested in designing and running efficient trials. To stay informed of current practices, she is a member of the UK Trial Managers’ Network (UKTMN) and participates in both UKTMN events and International Clinical Trials Methodology Conferences.

jenny.riga@paediatrics.ox.ac.uk

Dr Stefen Brady is a Neurologist and Specialist Neuromuscular Consultant. He studied medicine at Trinity College Medical School in Dublin, Ireland and completed his higher specialist neurology training in Yorkshire. He trained in muscle diseases with Dr David Hilton-Jones at the John Radcliffe Hospital in Oxford and with Prof. Mike Hanna and Prof. Janice Holton at MRC Centre for Neuromuscular Diseases in London. 

Dr Brady was an MDUK funded Clinical Fellow. He was awarded a DPhil by the University of Oxford for his thesis, A Clinicopathological Study of Inclusion Body Myositis (IBM), in 2014. Following his clinical fellowship, he was funded by Myositis UK to complete a Senior Clinical Research Fellowship at the MRC Centre for Neuromuscular Diseases in London.

Dr Brady has worked as a Specialist Neuromuscular Consultant since 2016. He leads the multidisciplinary Oxford Adult Muscle Service and works for the nationally commissioned NHS Highly Specialised Services for Rare Mitochondrial Disorders in Oxford.

Stefen.Brady@ouh.nhs.uk

Hayley is a Specialist Neuromuscular Physiotherapist, at Oxford University Hospitals. She sees a large cohort of patients with neuromuscular conditions, who access Oxford as their tertiary centre for neuromuscular and respiratory care.

She supports the Oxford diagnosis specific multidisciplinary clinics, which run on a weekly basis and also provides outreach support to general neurology clinics and offers community and hospital visits as required.

Within her role she supports patients in their orthopaedic and respiratory management, offering input during planned and unplanned admissions and linking in with other members of the wider multidisciplinary team and community therapists.

She is also a part of the Oxford Congenital Myasthenia Service. This is a nationally funded service, which includes both paediatric and adult patients. She is currently working on projects in collaboration with other specialist physiotherapy colleagues, on the application of outcome measures and exercise advice in this patient cohort.

Having completed a degree in Human Biosciences at Plymouth University, Tamar worked for Roche Pharmaceuticals as a global study assistant. She then went on to complete a Graduate Diploma in Nursing and gained experience working in Medical Assessment and Gynaecology, Female Surgery and Early Pregnancy before moving to Critical Care Nursing. She then returned to research and joined the PICU research team at Birmingham Children’s Hospital and most recently has worked as lead Gastroenterology Research Nurse at University Hospitals Birmingham before moving to the Oxford Paediatric Research team as the Clinical Research Manager.

01865 227503
tamar.cameron@paediatrics.ox.ac.uk

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