Birmingham Heartlands Hospital, University Hospitals Birmingham NHS Foundation Trust

Birmingham Heartlands Hospital hosts a neuromuscular service for children as well as a respiratory service for adults and children with neuromuscular conditions.

The children’s Neuromuscular service provides diagnostic and outpatient services for children with the full range of neuromuscular conditions, including Duchenne muscular dystrophy (DMD), spinal muscular atrophy (SMA), congenital myopathies, congenital dystrophies and genetic peripheral neuropathies. More than 100 boys with DMD are seen in the clinic and a total of approximately 350 children with neuromuscular conditions.

The children’s service is a multi-disciplinary team with both general and specific clinics for children and young people with a wide range of neuromuscular conditions from across the West Midlands. There are inpatient facilities for children to be admitted, if necessary, often jointly with the paediatric respiratory team.

The team includes two neuromuscular consultants, two neuromuscular  physiotherapists and two Care Advisors. There is close liaison with the paediatric respiratory team, with clinics run in parallel. More than 30 children are supported on non-invasive ventilation. The respiratory team includes Dr Titus Ninan, Paediatric Respiratory consultant, respiratory Clinical Nurse Specialists and NIV physiotherapists. There is also close liaison with cardiology at Birmingham Children’s Hospital (BCH), genetics, orthopaedics at BHH, spinal surgery at the Royal Orthopaedic Hospital (ROH) and pathology at UHB.

We are a member of the NorthStar clinical network and contribute to national audit. We have an active research interest and currently participate in clinical trials including FOR_DMD (steroid regimens in DMD), Oleos (phase 2 trial of olesoxime in SMA), Summit phase 1b and phase 2 (trials of Utrophin up-regulation in DMD), DMD heart protection and the DMD translational study. There is a team of research nurses and data entry support for research.

Experience of running trials

Current trials-

SUMMIT 05 (PhaseOut DMD), Phase 2 study, now in extension phase.

FOR_DMD

STRIDE (Translarna)

DMD Heart Protection

OLEOS (SMA), Phase 2 study

 

 

Past trials –

SUMMIT 02, phase 1 study

SUMMIT 03, phase 1 study

SUMMIT 04, phase 1 study

Trophos, phase 2 study of Olesoxime in type 2/3 SMA

Other relevant projects

Becoming an adult: transition for young men with DMD: three centre study 2007 – 2009. This report was commissioned by the Department of Health and published by the School for Policy studies, University of Bristol

Member of NorthStar clinical network since its inception

Member of SMARTnet and to transfer to SMAReach in 2018

Contact Information

Department Name
Paediatric Neuromuscular clinic
Visit Us

Birmingham Heartlands Hospital,

Bordesley Green East,

Birmingham

B9 5ST

Primary Phone Number
0121 424 3687
Primary Email Address
helen.roper@heartofengland.nhs.uk, deepak.parasuraman@heartofengland.nhs.uk
Primary Contact Person
Patients: PaediatricResearch@heartofengland.nhs.uk
Industry: PaediatricResearch@heartofengland.nhs.uk, deepak.parasuraman@heartofengland.nhs.uk
National Institute for Health Research (NIHR) Contact:
Linda Porter, linda.porter@nihr.ac.uk
 
 
View Clinical Trials At This Site  
 
 

Current Trials:

Study Name Status
Summit- Ezutromid (PhaseOut DMD) Recruiting
FOR-DMD Ongoing (fully recruited)
 
 

Contact Listing:

Dr Helen Roper is a paediatrician specialising in neuromuscular disorders. She is based at Birmingham Heartlands and Birmingham Children’s Hospitals and runs a service for children with neuromuscular conditions from the West Midlands. 400 children are seen in the multi-disciplinary clinics, including 100 with Duchenne Muscular Dystrophy. Dr Roper convened the UK Muscle Interest Group until 2017and has been a member of the Council of the British Myology Society and the British Paediatric Neurology Association. She is a member of the Editorial Board of the journal Neuromuscular Disorders. Over the past few years, the unit has become increasingly involved in clinical trials of new treatments for DMD and Spinal Muscular Atrophy. Dr Roper has also acted as a member of the Safety and data monitoring committees for a number of DMD trials. She has more than 40 publications in the neuromuscular field

0121 424 3687
julie.wright@heartofengland.nhs.uk

I work at Birmingham Heartlands Hospital as a Specialist Neuromuscular Physiotherapist in the Regional Paediatric Neuromuscular Clinic. I undertake assessments and support the local physiotherapy teams with the treatment of our patients.  I am involved in a number of national and international research studies for the treatment of DMD and SMA. 

I qualified as a Chartered Physiotherapist in 1992 and commenced work at Birmingham Heartlands Hospital as a junior physiotherapist undertaking a variety of rotations.  I have worked in paediatrics since 1996 and started specialising in paediatric neuromuscular conditions in 1998.  During this time the management of neuromuscular conditions has improved significantly, I have enjoyed being part of this development and I am looking forward to the advances.

0121 424 3820
heather.mcmurchie@heartofengland.nhs.uk

Dr Parasuraman recently joined our team. His main interests include Paediatric Neuromuscular conditions and Neurodisability

0121 424 3687
julie.wright@heartofengland.nhs.uk

I graduated in 2001 and completed my junior rotations at Hammersmith and Charing cross hospital, London.  Here I gained experience working with one of the leading neuromuscular services and it started my special interest in this field.  I then went on to specialise as a senior paediatric physiotherapist at Hammersmith hospital in 2003 which also involved working within the paediatric physiotherapy department at St Marys hospital in London and gaining experience within both the community and acute paediatric physiotherapy. 

After traveling the world for a year I then came back to England to work at Chelsea and Westminster hospital as a senior paediatric physiotherapist before relocating to Birmingham.  Initially I worked for a year as a community physiotherapist both within the special needs schools and the child development centres. I then moved to Birmingham children’s hospital where I worked for 9 years and specialised in the field of neurology with a special interest in Neuromuscular.  In 2017 I was appointed to my current role at Birmingham Heartlands Hospital as a Paediatric Neuromuscular Physiotherapist.

0121 424 3820
Rosanna.rabb@heartofengland.nhs.uk

I am a Paediatric Research Nurse based at Birmingham Heartlands Hospital. The Paediatric Research Nurse Team  at Heartlands Hospital have been providing high quality research for over 5 years. We work closely with a number of specialities including Neuromuscular. Our Commercial, and non- commercial trials have increased massively in the last 2 years and continues to grow.

I myself have worked in research for over 2 years now, I previously worked in an acute paediatric setting and have nursed a variety of patients covering a wide variety of conditions. I have always been fascinated with research and the way  and humans we are constantly striving to find answers and cures to make life easier for those  who require medical care and anyone living with any type of condition be it mental health or a progressive life limiting disease.  

0121 424 2917
Laura.thrasyvoulou@heartofengland.nhs.uk