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Earlier this month, the team at the Anne Rowling Clinic reached its recruitment goal of 30 people with MND across Scotland within the span of 6 months.
The ALS-Biomarker study was co-led by senior research nurse Ethan Stoker at the Anne Rowling Clinic. This is one of the first trials at the Anne Rowling Clinic where a nurse has taken the leadership responsibility and overall management of a trial through the National Institute for Health and Care Research (NIHR) Principal Investigator Pipeline Programme. This reflects an exciting new development that demonstrates the ability of the Anne Rowling Clinic to innovate in the research field and will further build the capacity of the research team to run more studies and offer people with MND more chances to participate in research.
"People were recruited from across Scotland, ranging from Aberdeenshire to Dumfries. The prioritisation of remote sample collection allowed us to offer a wider variety of people the ability to engage in research.
This ‘decentralisation’ of research, moving it away from concentrated hubs, is essential in overcoming the structural barriers that exist for people with MND.
We know that people want to engage in research but may not always get the chance to participate due to barriers such as issues with travel, and a wide variety of personal factors that can affect someone with MND from participating in research.
Reaching our recruitment goal within 6 months reflects the incredible alturism of the MND community in Scotland. I'd like to say thank you to all our participants and their families for taking part in this research project."
Ethan Stoker, senior research nurse at the Anne Rowling Clinic.
The ALS-Biomarker study is led by University College London with sites across the UK; the Anne Rowling Clinic is the main recruitment site for Scotland. The observational study aims to collect a range of biomarkers, including blood, saliva, and urine from people living with motor neuron disease (MND), also known as amyotrophic lateral sclerosis. The ALS-Biomarker study will also assess the feasibility of using remote collection of blood, urine, and saliva samples.
Relevant links
Ethan Stoker profile
Find a Research Project (filterable by condition)
UCL Biomarker Studies website (external website)
NIHR Principal Investigator Pipeline Programme (external website)
Funder(s)
The ALS-Biomarker study is funded by a consortium of government and charity funders under the banner of "United2EndMND".