AMBRoSIA and NECTAR – Make your mark on MND

It has been almost a year since we announced that AMBRoSIA (A Multicentre Biomarker Resource Strategy In ALS) had begun to recruit participants (read the Autumn 2017 edition of Thumbprint).

AMBRoSIA is the biggest project that the MND Association has ever funded and recruitment occurs at three sites throughout the UK (Sheffield, headed by Prof Dame Pam Shaw, Oxford, headed by Prof Martin Turner and London, headed by Dr Andrea Malaspina).

The project will collect a number of biological samples, including blood, cerebrospinal fluid (CSF), urine and skin in order to identify biomarkers (markers of biological change) that could be a signature of MND.

The blood and urine will be collected from people with MND up to four times a year for a period of three years and CSF collected up to three times throughout the study. This will provide researchers with a longitudinal sample and data set to investigate and analyse. Studies that collect samples and data at one time point only provide researchers with a snapshot of what is happening at one point in time. The advantage of collecting a number of samples over time (a longitudinal study) is that it enables researchers to ascertain what is happening over time and map changes that occur in biomarkers as the disease progresses. For the control participants, the biological samples are only collected once.

The first participant was recruited to the project at the beginning of June 2017 and in the months since that date, the clinics have recruited more than 100 people living with MND and 100 control participants into the study. The first participants recruited into the study are now beginning to attend their second and third visits, meaning that the longitudinal part of the study is well and truly underway. The samples that have been collected so far are beginning to be tested for a number of biomarkers and the data collected from these participants are being entered into the project database.

AMBRoSIA has a sister project called NECTAR (led by Dr Janine Kirby at the University of  Sheffield and Dr Piatro Fratta at University College London) that will provide rapid, effective and comprehensive genetic screening for the participants taking part in the AMBRoSIA study. This means that researchers will be able to compare the results from the genetic screening (known as a genotype) with the results from the biomarker results from the blood, CSF, urine and skin (known as a phenotype). This might lead to a potential test to help with diagnosis as well as with predicting the rate of disease progression (prognosis) for people with MND in the future. The NECTAR team are currently preparing to start the genetic screening.

AMBRoSIA will provide researchers with a set of biomarkers that are unique to MND and will help us to tease out the different subtypes of the disease as well as to understand whether a person with MND will develop a slow or fast progressing form of the disease.

The wealth of information that will be available through the AMBRoSIA project aims to enable a faster and easier diagnosis of MND by finding a test that could be fairly easy to perform rather than the current lengthly diagnosis procedure that relies on discounting all other possible conditions, leaving MND the last and only remaining option.

Over the next three to five years, a total of 900 people with MND and 450 control participants will be recruited into the study, meaning that AMBRoSIA will make a vast contribution to our understanding of MND, how it progresses, and could ultimately lead to the development of effective treatments.


Can I take part?

Dr Malaspina at the London clinic is looking for people with MND, as well as first-degree relatives of people with MND (e.g., parents/children, siblings) and healthy volunteers to provide biological samples.

There are no strict eligibility criteria, however, participants will need to travel to the trial centre on a regular basis to donate samples. Find out how to take part here.

4 thoughts on “AMBRoSIA and NECTAR – Make your mark on MND

  1. Is there a reason that Scotland is excluded from this and similar research? I, for one,would be happy to contribute toward improving the lot of fellow MND sufferers.

    • Hi Ian,

      There is no specific reason Scotland (or any other parts of the UK) was not included in this study and the selection of centres was based on the location of the researchers leading the study. MND Scotland fund a number of research studies that take place throughout Scotland, some of which you can take part in (www.mndscotland.org.uk/research/research-we-fund).

      Best Wishes,
      Martina

  2. Hello, I have already said that I would be happy to take part in this study.

    I put my name forward last year at the York Regional Conference and also my Care Centre nurse, Anthony Hanratty put my name forward too.

    • Hi Cath,

      Thank you for showing an interest in the AMBRoSIA study. I am sorry if you haven’t been contacted by the study organisers after showing an interest in the study. To get in touch with the London branch, you can contact Dr Malaspina – see details on our website: http://www.mndassociation.org/get-involved-in-research/ambrosia. Otherwise, please contact your MND Care Centre to see whether you can take part more locally (i.e. in Sheffield).

      Best Wishes,
      Martina

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