Royal Manchester Children's Hospital, Manchester University Hospitals NHS Foundation Trust

Manchester University NHS Foundation Trust (MFT) was formed on 1st October 2017 following the merger of Central Manchester University Hospitals NHS Foundation Trust (CMFT) and University Hospital of South Manchester NHS Foundation Trust (UHSM).

Royal Manchester Children's Hospital provides specialist healthcare services for children and young people throughout the North West.

The hospital sees 220,000 patient visits each year across a range of specialities and has 371 beds.

RMCH has a dedicated National Institute for Health Research (NIHR) Manchester / Wellcome Trust Clinical Research Facility at Royal Manchester Children’s Hospital. This is a bespoke research unit, with state of the art equipment, dedicated to the testing of and development of new therapies for a wide range of childhood diseases. The CRF has the capacity for complex inpatient clinical trials including rare metabolic disease, cancer, autism and kidney failure. There are 2 clinical trial coordinators, 16 research nurses and practitioners and a data administrator. The unit has been open 8 years, is positioned in the heart of RMCH and has extensive experience of early phase trials including trials in DMD.

Paediatric Neurology

The Paediatric Neurology Department currently has eight Consultants two of whom have an interest in neuromuscular disease and see and care for approximately 400 patients with various neuromuscular conditions. Of these patients around 70 have Duchenne Muscular Dystrophy (DMD). The Manchester neuromuscular service is well-established with close links with relevant clinical services, including respiratory, with facility for polysomnography and ventilator support, cardiology, metabolic bone, orthopaedics (spinal surgeons, foot surgeon and upper limb surgeon), orthotics, histopathology, radiology, genetics and inherited metabolic disease. Joint clinics are held with respiratory and orthopaedic colleagues. There is a regular neuromuscular scoliosis MDT. There is a transition clinic

Experience of running trials

Since 2013 the Manchester team is or has already been involved in a number of clinical trials, these have included early phase and phase 3 trials and natural history studies.

Other relevant projects

North Star Clinical Network

Contact Information

Department Name

Paediatric Neurology

Website

Visit Us

Royal Manchester Children’s Hospital
Manchester University Hospitals NHS Foundation Trust
Oxford Road
Manchester
M13 9WL

Primary Phone Number

+44 (0) 161 7012346

Primary Email Address

imelda.hughes@mft.nhs.uk

Primary Contact Person

Patients: Janet Johnson, janet.johnson@mft.nhs.uk
Industry: Imelda Hughes, imelda.hughes@mft.nhs.uk
National Institute for Health Research (NIHR) Contact:
Joanne Collins, joanne.collins@nihr.ac.uk

View Clinical Trials At This Site

Current Trials:

Study Name	Trial Status at Manchester	Overall Trial Status
Antisense - ATL1102	Fully recruited	Fully recruited
NS Pharma - RACER53-X	Enrolling by invitation	Enrolling by invitation
Hydrotherapy in DMD	Fully recruited	Recruiting
Catabasis - Galaxy DMD [TERMINATED]	Trial complete/terminated	Trial terminated
NS Pharma - RACER53	Fully recruited	Fully recruited
Phase 3 PolarisDMD Trial [TERMINATED]	Trial complete/terminated	Trial terminated
Patient Registry Translarna (Ataluren)	Fully recruited	Fully recruited
PTC Ataluren Phase 3	Trial complete/terminated	Trial complete
FOR-DMD	Trial complete/terminated	Trial complete

Study Name

Trial Status at Manchester

Overall Trial Status

Antisense - ATL1102

Fully recruited

NS Pharma - RACER53-X

Enrolling by invitation

Hydrotherapy in DMD

Fully recruited

Recruiting

Catabasis - Galaxy DMD [TERMINATED]

Trial complete/terminated

Trial terminated

NS Pharma - RACER53

Fully recruited

Phase 3 PolarisDMD Trial [TERMINATED]

Trial complete/terminated

Trial terminated

Patient Registry Translarna (Ataluren)

Fully recruited

PTC Ataluren Phase 3

Trial complete/terminated

Trial complete

FOR-DMD

Trial complete/terminated

Trial complete

Contact Listing:

Imelda Hughes, Dr

Having completed paediatric training in Belfast and Bath, and Paediatric Neurology training in Southampton, Dr Hughes has been a Consultant Paediatric Neurologist and Lead Clinician for the Neuromuscular Service at Royal Manchester children’s Hospital since 1996.

+441617012544

imelda.hughes@mft.nhs.uk

Janet Johnson

Janet Johnson trained as a Paediatric Nurse at Manchester University acquiring firstly a DPSN and then a BSC (Hons) 2.1 in Nursing Practices. Her background is mainly in the care of children with complex needs, life-limiting conditions, invasive and non-invasive ventilation. She has been a Neuromuscular Specialist Practitioner for the last 7 years, and supports patients and families both in hospital and in the community. She helps to coordinate services, support education and help with housing and the social and emotional wellbeing of children with neuromuscular conditions and their families.

+441617010679

Janet.johnson@mft.nhs.uk

Gary McCullagh, Dr

Dr McCullagh is a Consultant Paediatric Neurologist with expertise in paediatric neuromuscular disorders. Having initially trained in paediatrics in Belfast, he completed paediatric neurology training in Manchester. Following this, he completed a fellowship in neuromuscular disorders at the Dubowitz Neuromuscular Centre, Great Ormond Street Hospital, London.

+441617012544

gary.mccullagh@mft.nhs.uk

Emily Whitehouse, Dr

Dr Whitehouse completed undergraduate medical training and an intercalated psychology degree in Edinburgh. She finished Foundation training in the South Thames deanery before moving to general paediatric training rotations in the North West in 2010. Since this time, she has completed rotations in a range of paediatric specialties. Prior to starting her role as DMD Hub clinic research fellow, she gained her Certificate of Completion of Training in general paediatrics and an MSc in Global Health Policy. She is very much looking forward to working within the neuromuscular team, learning more about neuromuscular disease, working closely with families, and supporting the team with ongoing clinical trials in DMD.

Emily.Whitehouse@mft.nhs.uk

Sinead Warner

Sinead Warner completed her physiotherapy degree in Manchester and following this moved to New Zealand, where she completed rotational posts including paediatric specialities. On returning to Manchester, Sinead worked as a paediatric community physiotherapist where she developed an interest in neuromuscular conditions. Sinead now works as a highly specialised physiotherapist within the Neuromuscular team.

sinead.warner@mft.nhs.uk