University Hospitals Birmingham NHS Trust is a national centre for specialist clinical services, home to leading clinical research and one of the largest teaching hospital trusts in England.
Birmingham Heartlands Hospital BHH, based in East Birmingham, is part of University Hospitals Birmingham. The children’s department in BHH provides a number of specialist paediatric services for patients from across the West Midlands region.
There is a purpose-built Medical, Innovation, Research and Development Unit (MIDRU) at the Heartlands site hosting a unit with vast experience in supporting and facilitating high quality research. The paediatric research team consists of 3 dedicated paediatric research nurses and data manager.
The neuromuscular service for children is hosted at Birmingham Heartlands Hospital; including neuromuscular clinics and respiratory services for children with neuromuscular disorders. There is a dedicated neuromuscular clinic for adults at the Queen Elizabeth Hospital Birmingham. Adult respiratory clinics are held on both sites.
The children’s neuromuscular service provides diagnostic and outpatient multidisciplinary services for children and young people with 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 400 children with neuromuscular conditions.
We are a team of 2 consultants, 2 specialist physiotherapists and 2 care advisors. We run multidisciplinary clinics for children and young people with neuromuscular conditions along with the respiratory team aiming to reduce the need for multiple clinic attendances. The respiratory team includes one paediatric respiratory consultant, specialist respiratory nurses and physiotherapists. Over 30 children receive home Non-Invasive Ventilation NIV. Acute paediatric NIV is provided in the Paediatric High Dependency Unit for children with neuromuscular conditions during acute respiratory illnesses.
We work collaboratively with the paediatric orthopaedic team who holds clinics in BHH. Muscle biopsies for children are undertaken in Birmingham Heartlands Hospital by an experienced surgical team and with support from the pathology laboratory in Queen Elizabeth Hospital. We liaise closely with the spinal team in Royal Orthopaedic Hospital and with the paediatric cardiology and endocrinology teams in Birmingham Children’s Hospital. Transition clinics for young people with neuromuscular conditions and particularly DMD will be held jointly with the adult neurology and respiratory teams from March 2019.
We are a member of the NorthStar clinical network and contribute to national audit. We currently participate in a number of clinical trials in DMD and SMA. The team is continuously working on increasing experience in research and expanding the capacity to participate in upcoming clinical trials.
We participated in FOR_DMD (steroid regimens in DMD – 9 patients), Oleos (phase 2 trial of Olesoxime in SMA) terminated and currently setting up for Jewelfish (A Study of Risdiplam in SMA), SUMMIT phase 1b and phase 2, DMD Heart Protection and the DMD translational study. Currently preparing to participate in VISION-DMD (Vamorolone phase 2b). We have the ability to run trials that involve overnight stay.
Birmingham Heartlands Hospital,
Bordesley Green East,
|Study Name||Trial Status at Birmingham||Overall Trial Status|
|Patient Registry Translarna (Ataluren)||Recruiting||Recruiting|
|Vamorolone Phase 2b (VISION-DMD)||Not yet recruiting||Recruiting|
|Summit- Ezutromid (PhaseOut DMD)||Trial complete/terminated||Trial terminated|
|FOR-DMD||Fully recruited||Fully recruited|
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
Dr Parasuraman joined the team in November 2017. As a Neuromuscular consultant he is involved in their day to day care as well as being PI and SI for Neuromuscular trials at our site.
Our Neuromuscular clinic provides clinical care for about 400 children with various neuromuscular conditions and we care for around 100 children with Duchenne Muscular Dystrophy.
Dr Parasuraman is a Council member of the British Myology Society and coordinates the BMS teaching day.
Dr. Zoya Alhaswani is consultant paediatrician with special interest in paediatric neuromuscular disorders. She completed her training in paediatrics and paediatric neurodisability in the West Midlands, UK; during which she developed an interest in neuromuscular disorders. She joined the muscle team in 2018. She is based at Birmingham Heartlands Hospital and Birmingham Children’s Hospital. She is particularly interested in improving transition services for young people with neuromuscular conditions in consultation with young people and their families.
Zoya is working on increasing the capacity to participate in clinical trials in Duchenne muscular dystrophy and on developing the neuromuscular research programme at Birmingham Heartlands Hospital.
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.
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.
As the Paediatric Research Nurse for DMD and SMA based at Birmingham Heartlands Hospital part of the University Hospitals Birmingham NHS Foundation Trust; I am involved in the setup, running and close down of clinical trials both commercial and academic for the DMD and SMA population. There are 3 Paediatric Research Nurses and a dedicated Data Manager that been providing high quality research for over 6 years. Our commercial trial profile has increased dramatically over the last 4 years and continues to do so. We pride ourselves on providing a welcoming and safe environment for the patients and their parents / caregivers. We are constantly striving to improve our research environment to ensure that the patients are comfortable and happy, with the aim of having a positive experience whilst enrolled on a research study.