CARE-MND: Driving quality, equity and innovation in MND care and research

At MND Scotland we strive to fund pioneering research that brings us closer to a treatment for motor neuron disease (MND). One of the most enduring and impactful ways we’ve done this is through our support of the MND patient registry and database, now known as the Clinical Audit Research Evaluation – MND (CARE-MND).

Today, people in Scotland with MND can join the MND patient registry and have their details and care logged onto the CARE-MND platform. CARE-MND invites people living with MND in Scotland to participate in a registry that serves both as a clinical audit and a research interest database. The Scottish MND NHS nurses populate this database, which can be used to audit clinical care according to UK government MND guidelines, while also involving people with MND and their families in vital research. Did you know that MND Scotland played a vital role in establishing the register?

In 1989, MND Scotland awarded funding to Professor Charles Warlow, at the University of Edinburgh, to establish the Scottish MND register which, at the time, was the world’s first MND patient register. The register aims to collect consistent clinical and epidemiological data from people with MND in Scotland.

In 2010, MND Scotland awarded £198,555 to Professor Siddharthan Chandran to develop the register further. An audit conducted by health researchers at the Euan MacDonald Centre for MND Research revealed inconsistent clinical care and irregular access to research for patients. Collaborative efforts led to inviting newly diagnosed patients to join the register and the development of a single Scottish MND clinical assessment tool.

In 2015, A further £320,000 was invested by MND Scotland to expand and digitize the registry into a modern clinical audit tool, enabling researchers to audit care outcomes and improve treatment quality. This also led to a national standardized clinical proforma to ensure uniform assessment of all patients across Scotland, helping to tackle postcode lottery disparities in NHS care.

Thanks to MND Scotland funding, the team was able to develop CARE-MND to capture:

– Core patient details e.g. date of diagnosis or subtype of MND
– Information on the specialists who are or have been involved, such as neurologists, MND nurses and occupational therapists
– Information on medication or interventions, such as Riluzole or PEG insertion
– Cognitive assessment scores
– Genetic information
– Recruitment and consent information for clinical trials and tissue donation

The ability to capture this level of information in real time makes CARE-MND a world leader in MND patient registries. In terms of engagement of people with MND with the registry, Scotland is also leading the way globally with 99% of people with MND registered on CARE MND.

CARE-MND has helped to shape and transform clinical care and research in Scotland. It has achieved this by:

– Enabling real-time sharing of information between all healthcare professionals involved in a person’s care, helping to improve anticipation of clinical needs and allowing for earlier interventions.
– Real world data provides researchers with high quality clinical and epidemiological information over a long period of time, which helps them validate findings and develop new areas of research to better understand MND
– It allows for faster identification and recruitment of eligible participants for clinical trials.
– The information in CARE-MND can also be used to help guide policy development and plan services; to determine where resources should be allocated, to help shape local services, as well as guide policies and laws so they better reflect the needs of people with MND.

Over the last 36 years the Scottish MND patient register has come a long way. The vision of the clinicians who started it in 1989, and hard work of the researchers and MND nurses in the 2010’s, has allowed us to get to a place where our country’s MND register is seen as the benchmark for what a quality MND register should be. Thanks to the continued funding from the University of Edinburgh, who manage CARE-MND as part of NeuroCARE. CARE-MND continues to contribute greatly to MND research and care.

MND Scotland is incredibly proud to have played a significant role in that journey, from the initial funding awarded in 1989, to the additional investments that allowed the development of the important care and research tool we have today.

Explore more…..

If you’d like to find out more about the research that has been made possible because of the data in the CARE-MND platform, here are a few examples:

Finding out about MND genetics in Scotland: When people join CARE-MND, they can provide blood or saliva samples which allows their DNA to be examined for any genetic changes that are known to be associated with MND. Researchers can use this data to understand the different genetic variations present in people with MND in Scotland – they established that 13% of pwMND in Scotland have a genetic change associated with MND, with the most common being C9orf72. This information not only helps our understanding of MND as a disease, but it also allows preparedness for when targeted treatments, such the recent Biogen drug tofersen, become available for use. Examples of some of the publications in this area using CARE-MND data are:

– Neurobiology Aging 2017 – Genetic epidemiology of motor neuron disease-associated variants in the Scottish population.
– Journal of Neurology 2024 – Genotypes and phenotypes of motor neuron disease: an update of the genetic landscape in Scotland

Understanding how cognitive changes affect people with MND: People with MND sometimes experience cognitive changes and increased apathy. CARE-MND data has been used to help understand this better, leading to improved understanding of the disease. It has also led to further research looking at ways to help people affected by cognitive changes still retain autonomy of decision-making. Examples of some of the publications in this area using CARE-MND data are:

– Neurology 2018 – ALS-specific cognitive and behavior changes associated with advancing disease stage in ALS
– Cortex 2017 – Multidimensional apathy and executive dysfunction in amyotrophic lateral sclerosis

Demonstrating best practice in care: Understanding people’s care needs can help make sure that best practice is made available. Establishing what care is most useful for people with MND requires evidence gathering and CARE-MND provides this data. For instance, evidence gathered via CARE-MND has demonstrated that feeding via gastrostomy has become more common over the years, with survival in those who have this intervention remaining constant. It has also indicated which patients are best helped by this intervention. You can read the publications here:

– Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 2019 – Improved survival and 30-day mortality after gastrostomy in Scottish motor neurone disease patients: evidence from a national retrospective cohort study using STROBE criteria