CARE-MND integrates Clinical care, Audit, Research and Evaluation to provide ongoing comprehensive monitoring and research opportunities to every person living with motor neuron disease (MND) in Scotland.
Clinical care
People with MND in Scotland are cared for by a team of multi-disciplinary health professionals including dedicated neurologists and nurse specialists, as well as more specialised services such as physiotherapy, occupational therapy, speech & language therapy, a respiratory team and nutritional support. Our aim is to harmonise the highest possible care across all regions in Scotland.
People with MND in Scotland will be allocated an MND Clinical Specialist at the point of diagnosis.The MND Clinical Specialist is ideally placed to ensure a proactive approach in the delivery of timely advice and support for patient-centred care. They are a point of reference, support and guidance.
Patients will also be appointed to their nearest multi-disciplinary clinic, which is led by their regional MND specialist who knows and understand the condition.
Audit
The CARE-MND platform enables continuous audit of clinical service delivery in Scotland against benchmark standards such as the National Institute for Clinical Excellence guidelines for MND.
We carry out audits to ensure continuous improvement in the quality of service provided to people with MND.
Research
Everyone diagnosed with MND in Scotland is contacted about research opportunities, unless they decide to opt out.
People living with MND and other neurological conditions in Scotland are given the opportunity to join NeuroCARE, the Anne Rowling Clinic's 'one-stop-shop' for people living with a neurological condition in Scotland, where they can give permission to be contacted about research, and consent to donating a biological sample (such as blood or saliva), undergoing a brain or retina (eye) scan, taking part in digital research including voice recording, cognitive tests of thinking, learning and memory, or using everyday devices such as activity or sleep trackers.
People with MND are able to provide a vital contribution to studies including DASH (Digital App for Speech and Health Monitoring), stem-cell based disease modelling, biomarker and drug discovery.
There are also opportunities to take part in clinical drugs trials, including MND-SMART, Europe's largest-ever clinical drugs trial for MND, which is led by the Euan MacDonald Centre for MND Research at the University of Edinburgh.
Patients may also wish to consider donating tissue after their death to the Edinburgh Brain Bank.
All research activity and data sharing is tightly governed under strict legal and ethical frameworks. All patient data is de-identified before it is used for research, so individuals would not be identifiable to researchers or in research outputs.
Evaluation
We take responsibility in Scotland for the development of a national strategic approach to delivering services to people affected by MND, through clinical leadership, ongoing continuous professional development and training.
We will ensure that Scotland has first class evidence-based care for people living with MND.
Impact on care and research
Because CARE-MND is tightly linked to the team of Clinical Specialists who contact everyone diagnosed with MND in Scotland, ascertainment is >95% on a national level (approximately 200 new diagnoses each year)
The high coverage provides excellent validity for evidence-based audit of clinical care, for example, to monitor rates of diagnosis, drug prescribing, and use of interventions such as ventilation. It can also help ensure equity of provision across the different health boards and postcodes.
Longitudinal clinical information is richly annotated, and with linked biosampling, imaging and cognitive data, provides a world-leading resource for research. For example, the CARE-MND data and samples have been used in research investigating genetics, blood biomarkers, cognitive symptoms, and stem-cell based mechanistic studies, including via international collaborations such as the New York Genome Center ALS Consortium.
CARE-MND page on Edinburgh Research Explorer
- a listing of research outputs that have used CARE-MND
Anne Rowling Clinic Resource Access webpage
- explore how to access CARE-MND resources
CARE-MND personnel
The CARE-MND team comprises a large team of clinical academics, nurses and other healthcare professionals, people with lived experience, researchers and professional services staff at the University of Edinburgh and in NHS health boards across Scotland.
It is only possible due to the generosity of people living with MND in Scotland, and the commitment of their Clinical Specialists.
Anne Rowling Clinic Consortium Members webpage
- a listing of current and previous consortium members
CARE-MND Lived Experience Panel
The direction and delivery of CARE-MND is shaped by people with lived experience of the condition:
- Bruce Virgo (MND-SMART website)
- Steve Barrett OBE (MND-SMART website)
History of CARE-MND
Scotland was the first country in the world to establish a national MND Register. Scotland's register was established with funding from charity MND Scotland in 1989 by Prof Charles Warlow and the Scottish Motor Neuron Disease Research Group, and was active until 1998. The original register is described in Scottish Motor Neuron Disease Research Group, Journal of Neurology, Neurosurgery and Psychiatry (1992), doi: 10.1136/jnnp.55.7.536.
In 2010, the national register was re-activated as SMART-MND / FutureMND, led by Prof Siddharthan Chandran with Shuna Colville, at the University of Edinburgh. It was part-funded from 2010 to 2017 by MND Scotland.
In 2015, digitisation and a rebrand to CARE-MND brought the platform under the remit and funding of the Anne Rowling Regenerative Neurology Clinic, University of Edinburgh. CARE-MND is co-led by Prof Siddharthan Chandran and Prof Suvankar Pal, with Judith Newton, MND Nurse Consultant for Scotland and Deputy Director of the Anne Rowling Clinic.
Related links
Euan MacDonald Centre for Motor Neuron Disease Research: Scotland's charitable network for research into MND
