By Dipansu Ghosh, Consultant Respiratory Physician, Leeds Teaching Hospitals NHS Trust

The new Rob Burrow Centre for Motor Neurone Disease (MND) won’t just offer care and support for patients and families – it will also be a centre for ground-breaking research into diagnosis and treatment of the disease.

Here in Leeds, our multidisciplinary team is taking part in a new research study called the DENIM Trial, because we want to improve the breathing support we provide to people with MND.

Breathing difficulties are common in people with MND, because the disease weakens the breathing muscles that helps the lungs inhale and exhale.

The trial is testing whether a new approach using enhanced remote monitoring technology (telemonitoring) can help our healthcare team provide better support for patients using non-invasive ventilation (NIV). These are the portable ventilators and masks that help with breathing difficulties in MND.

We will be approaching people with MND who have been referred to us to start using NIV for the first time.

Patients who decide to join the trial will either receive their usual respiratory care and some remote monitoring, or they will be part of the group that gets additional enhanced remote monitoring support during their first 12 weeks of using NIV.

Through this research, we hope to learn whether this new approach leads to better NIV support for people with MND and whether it can be successfully adopted within NHS services like ours at Leeds.

We’re proud to be part of this trial, which is being led by the University of Sheffield. It’s just one of the important pieces of research that will be taking place at the new Rob Burrow Centre, where we will have a range of treatment and therapy rooms, and space to enable everyone to work together, sharing ideas and developing new ways of working. This is only possible thanks to all those people who have fundraised to make this centre a reality.