Robert Jones and Agnes Hunt hospital has a national and international reputation for orthopaedic surgery and musculoskeletal medicine, including research into disorders of bone, joints and muscles. Services and research activities include spinal injuries, rheumatology, sports injuries, stem cell therapy, metabolic disorders, neuromuscular disorders and orthotics.
We are a multidisciplinary team consisting of two full-time consultants, one neuromuscular clinical specialist nurse, one transition nurse, one care advisor, one clinical psychologist, and two physiotherapists, one being a clinical specialist. Two other consultants attend clinics on a regular basis; a genetic consultant and an adult consultant neurologist, who have their own patient list with our team and contribute to the MDT.
We run a full diagnostic service including biochemical, genetic, imaging and histopathology, which is part of our MDT approach to the treatment, and management of adults and paediatrics with neuromuscular disease.
We also have MDT clinics with visiting adult and paediatric consultant cardiologists and a ventilation clinic with a respiratory consultant, respiratory specialist nurse and physiologist. This enables us to see our patients in one setting so reduces the need for multiple hospital appointments.
In addition to our NMD clinics, we also run combined clinics; one with a Paediatric Orthopaedic Consultant Surgeon and the other with an Adult Orthopaedic Consultant Foot and Ankle Surgeon with the Orthotist, as well as a joint clinic with a Paediatric Rheumatologist and Geneticist, and a Specialist Arthrogryposis clinic with an orthopaedic surgeon and geneticist.
We also coordinate the 100K Genome Clinic for Rare Diseases and run regular MDT and muscle biopsy meetings.
As a team, we are involved in collaboration with the Neuromuscular centre and Manchester University in developing muscle and exercise protocols and studies. As a team, we are involved in running the FSHD arm cycling trial (funding from the Institute).
Dr Tracey Willis chairs the West Midlands Neuromuscular Network and is a member of the North West Neuromuscular Network. She is also a member of the Research Panel at Robert Jones and Agnes Hunt.
The Muscle Team
RJAH Orthopaedic Hospital
NHS Foundation Trust
|Study Name||Trial Status at Oswestry||Overall Trial Status|
|Italfarmaco - Givinostat Extension||Enrolling by invitation||Enrolling by invitation|
|Santhera SIDEROS Open Label Extension [TERMINATED]||Trial complete/terminated||Trial terminated|
|Santhera (SIDEROS) [TERMINATED]||Trial complete/terminated||Trial terminated|
|Disease translation in DMD: Neuromuscular rare disease translational research in patients with DMD.||Recruiting||Recruiting|
|Italfarmaco- Givinostat (EPIDYS)||Trial complete/terminated||Trial complete|
Dr Tracey Willis is a Paediatric Neurologist with an interest in neuromuscular diseases. She completed her paediatric neurology training in Birmingham, UK and then worked as a Paediatric Neurologist in Birmingham, UK and Auckland, New Zealand. In 2008, she became the Muscular Dystrophy UK (MDUK) Clinical Research Fellow at the Institute of Genetic Medicine in Newcastle with Professor Straub and Professor Kate Bushby, and obtained her doctorate which involved coordinating a multicentre MRI/MRS study in LGMD2I and designing and implementing the FKRP International Patient Registry. During this time, she also coordinated a national DBS audit, which has contributed to a larger European DBS audit in diagnosing LOPD.
She is currently the Clinical Lead for the Muscle service at Oswestry, a tertiary referral centre for patients with neuromuscular conditions, both paediatric and adults, and this has recently been awarded 'Centre of Excellence' status by MDUK. She also works at Birmingham Children's Hospital, running the neuromuscular service. Clinically, she is involved in the diagnosis and care of a broad spectrum of patients with neuromuscular diseases.
She continues an active interest in research; recently receiving a grant for an FSHD exercise study, and collaborates with many colleagues both in the UK and aboard in various projects, advisory panels and working groups. She is the Medical Monitor for FOR-DMD, an international steroid trial in DMD, and is on the Steering Committee for the FSHD International Registry
I have qualified as a consultant in paediatric neurodisability and neuromuscular disorders and have been working in this position since 2012. I have experience in both paediatrics and adults neuromuscular conditions, allowing me to manage these conditions lifelong from the time of presentation. I am Royal College representative for NICE in neurodisability sub-speciality.
I have experience of working in multicentre drug trials. I am presently performing research at our centre in innovative methods of rehabilitation of untreatable conditions.
I qualified from Keele University in 2005 with a first in Physiotherapy. I started working at the Neuromuscular Centre in Winsford, treating and managing adults with NMD. This involved a range of interventions from stretching programmes, musculoskeletal assessments and treatment through to hydrotherapy and exercise prescription.
In 2009, I started work at the RJAH Orthopaedic Hospital working alongside Dr Quinlivin as part of the NMD MDT. This again involved management of adults with NMD but now also paediatric patients. In addition, my role expanded to include being involved in NMD research trials. I also worked in two further departments:
1. Orthotic Research and Locomotion Assessment Unit (ORLAU), a specialist department assessing abnormal gait and provision of various interventions to improve functional walking.
2. Alice Ward, which involved the treatment and rehabilitation of paediatric patients with a range of conditions - CP, NMD, chronic pain, CFS etc.
I have also undertaken further study at Keele University obtaining a Postgraduate Diploma (Physio) in 2012. I have attended a variety of external conferences concerned with the care and management of NMD patients.
I joined the DMD Hub as a Clinical Trial Coordinator in May 2021. I have worked at The Robert Jones and Agnes Hunt Orthopaedic Hospital since September 2020 where I originally joined the research department as a placement student for my university degree. I am expected to graduate from my Biomedical Science degree in May 2022, where I would have completed 4 years of study. I work on neuromuscular studies within the department and coordinate the DMD studies we are currently running.
I have worked as a research nurse at the Robert Jones and Agnes Hunt Orthopaedic Hospital since 2016. My role with the DMD hub at Oswestry is to assist in the set-up and running of clinical trials. I particularly enjoy the clinical aspects of my job, meeting the many lovely boys and their families enrolled onto the studies we run here. As a team we strive to drive forward research in DMD.
James completed his paediatric nurse training in 2005 in Manchester and spent 3 years working at the burn's unit at Manchester Children's Hospital. He relocated to Shrewsbury in 2008 and spent time working on neonates before working for 6 years full time at Hope House Children's Hospice providing specialist palliative care to children and young adults. In 2015 James took on a new research post at Shrewsbury and Telford Hospital Trust and spent 5 years developing the paediatric portfolio as well as supporting many other specialities within research. He continued and still continues to work one day a week at hope house clinically and is passionate about supporting families clinically and driving research.