AMBRoSIA – our biggest ever research project

The AMBRoSIA (A Multicentre Biomarker Resource Strategy In ALS) project is our biggest, most ambitious research undertaking to date. The project funding began in August, closely followed by being the focus of this month’s ‘Make Your Mark’ fundraising appeal. Here we explain more about what this flagship project is all about.ambrosia-pic

This new five year research project, costing in excess of £2 million, will search for biomarkers of MND on larger scale than ever before. It will leave a legacy resource to improve diagnosis and our understanding of MND for the future.

AMBRoSIA will be nested in three world-class research centres in Oxford, London and Sheffield, and will be led by three of the UK’s top MND researchers – Prof Martin Turner (Oxford), Dr Andrea Malaspina (London) and Prof Dame Pamela Shaw (Sheffield).

Why do we need biomarkers?
A biomarker is a ‘fingerprint’ of MND – something that can be measured in the body that is unique to MND. Biomarker discovery would mean a faster diagnosis and a better understanding of the disease, which will lead to bespoke, effective treatments. You can read more about why biomarkers are so important in a previous blog.

The collection of good quality samples, from the same people over time, is at the heart of biomarker research – and that’s what AMBRoSIA is all about.

Who can take part?
AMBRoSIA will recruit 900 people with MND to take part. In addition, 450 people without the disease will also be recruited, for comparison (this is known as a control group). The control group will consist of 135 first-degree relatives of people with MND (a parent, sibling or child), and 315 people with no family link to the disease.

What samples will be collected?
Participants will donate blood, skin and urine samples on a regular basis. Where possible, cerebrospinal fluid will also be collected.

In total, it is expected that AMBRoSIA will collect over 250,000 samples across the five years of the project.

What will the samples be used for?
The samples collected will be stored across the three sites and will undergo a series of tests to search for biomarkers of MND. In addition, the skin cells will be used to create motor neurones using ground-breaking stem cell (iPSC) technology. You can find out more about iPSC technology on our website. Motor neurones created using iPSC technology will be used to screen potential new drugs.

Ultimately, the samples will form a new large-scale biomarker testing resource, which will be used to for future research.

How will the samples be analysed?
The lead researchers were all involved in the development of international consensus guidelines for the collection, processing and storage of samples of the highest possible quality. These guidelines will be used in the sample analysis for AMBRoSIA.

All the samples need to be processed using the same 'recipe'.

All the samples need to be processed using the same ‘recipe’.

The TV programme the Great British Bake Off illustrates the importance of developing guidelines for sample processing. Those of you familiar with the programme will know that even though the contestants may be given exactly the same recipe, their cake creations may turn out very differently! The researchers want the same results from using their ‘recipes’ in every centre!

What happens now?
The project is now in the crucial set-up phase. This includes setting up the structure of AMBRoSIA and its governing system, recruiting the scientists to work at each centre, and gaining the ethical approval needed to undertake the study. A Steering Committee is being formed, which will oversee the running of the project. This will comprise of research leaders, representatives from the MND Association and people living with MND.

How can I get involved?
As the study is still being set up, the researchers aren’t collecting samples yet. However, if you have MND you can let us know that you are interested in taking part by joining our research list.

When the researchers are ready to start collecting samples we will send out a letter to everyone on this list, explaining what to do next. There’s more information on the research list on our website. Please email us on our email address if you would like to be added.

Evaluating a new neck support for people living with MND

We know that neck weakness can be a difficult symptom to manage in people with MND, and that the current offering of neck collars and supports do not always suit everyone. In order to come up with a solution to this, we are funding Dr Chris McDermott from the Sheffield Institute for Translational Neuroscience (SITraN) to develop a new type of neck support for people with MND (our reference: 928-794).

5 b (3)Designers, health professionals and engineers, along with people with MND, have developed a new support called the Sheffield Support Snood. The Snood is an adaptable neck collar, which can be modified to offer support where the wearer requires it most.

The Snood was initially tested in 26 people living with MND in 2014. The current stage of the project, called the Heads Up project, will evaluate the Snood in around 150 people. This will contribute towards providing the necessary wider consumer testing of the Snood, which in turn will help when looking for a commercial partner to take on the manufacture of this product. Continue reading

TONiC: Creating a quality of life ‘toolkit’ for MND

The MND Association funds several healthcare research projects that aim to improve care and symptom management for people living with MND.

One such project is TONiC, which is examining factors that influence quality of life in patients with neurological conditions, including MND.

So what is TONiC?

Tonic-Logo-1189x841The Trajectories of Outcome in Neurological Conditions (TONiC) study is the largest of its kind in the world. Our funding involvement began in 2015, to help the TONiC team continue with their study (our reference 929-794).

TONiC will hopefully have a significant and positive impact on the lives of all patients living with neurological conditions, regardless of symptoms, stage of illness, age or social status.

Continue reading

Heading in the right direction: Sheffield Support Snood update

We are funding, together with the NIHR i4i (National Institute for Heath Research invention for innovation) programme, a research team in Sheffield who have developed a new type of neck support for people living with neck muscle weakness as a result of a neurological condition.

Designers, clinicians and engineers from University of Sheffield, Sheffield Hallam University, Devices for Dignity, Sheffield Teaching Hospital, Barnsley Hospital, and the Sheffield MND Research Advisory Group have worked together with people living with MND to develop the Sheffield Support Snood through an iterative design process.

The results from a small pilot study of the snood were presented at the International Symposium on ALS/MND in Brussels last year, where we reported on it.

5 b (3)

Next step – the 100 collars project

In September we attended the Sheffield Support Snood training day, run by Devices for Dignity, Sheffield Teaching Hospitals NHS Foundation Trust, and Dr. Christopher McDermott, a Clinician Scientist at the Sheffield Institute for Translational Neuroscience (SITraN) who is the Chief Investigator for the project . Continue reading

Using video messages to help leave a digital legacy

In a guest blog, PhD student Oliver Clabburn tells us about his family’s experience of MND and his research interests. He also explains how you and young people in your family can help him with his latest research project looking into digital legacies.

Olly Clabburn

In the mid-nineties my family joined the technology revolution with an answering machine! We had only just returned home when my Dad started recording the answering message.

In 1997, Dad started having problems with his speech and weakness in his legs. He was diagnosed with MND later on that year, and within a few months after first visiting the doctor, he had stopped work because of his deteriorating speech and regular falls. He became more and more reliant on his robotic sounding light-writer as he lost his voice, and soon, the answering machine was the only reminder I had of what he once sounded like. Continue reading

Raising the profile of Kennedy’s disease

Did you know the MND Association also supports people who have Kennedy’s disease?

In May a new clinic specialising in Kennedy’s disease opened in London at the National Hospital for Neurology and Neurosurgery.

To mark this big step in helping support and treat people with Kennedy’s disease, Katy Styles who campaigns on behalf of the Association, and whose husband Mark has Kennedy’s disease, thought it would be a great opportunity to raise awareness of this rare condition.

Katy and Mark Styles
Katy and Mark Styles

There is very low awareness of this disease amongst neurologists, healthcare professionals, the general public and within the Association itself. We do all we can to explain to everybody what Kennedy’s disease is and what it’s like to live with.

Due to the rarity of Kennedy’s disease you can feel very much alone. It is so great to be part of the MND family and the Association is key to this by making us feel part of a wider community.”

What is Kennedy’s disease?

Kennedy’s disease is a condition similar to motor neurone disease (MND) which affects motor neurones. It is sometimes called spinal and bulbar muscular atrophy (SBMA). Continue reading

Disappointing news for diaphragm pacing in MND

Results from the UK clinical trial of diaphragm pacing in MND/ALS (known as DiPALS) were published online today in the journal Lancet Neurology.

DiPALS was the first randomised clinical trial of diaphragm pacing in MND and aimed to find out whether or not diaphragm pacing was beneficial when added to the current standard treatment of non-invasive ventilation (NIV), compared to NIV treatment alone.

The trial results unfortunately show that diaphragm pacing was not beneficial when used in addition to NIV, and was in fact harmful, with people using diaphragm pacing living on average 11 months shorter than those on NIV alone.

Continue reading

Research priorities in palliative and end of life care

Palliative-care-2In a fitting start to a new year, the results of the Palliative and End of Life Care Priority Setting Partnership top 10 priorities for research were released today. The topics range from: the best way to get out of hours palliative care, how to provide palliative care for everyone irrespective of where they live in the UK, to the best way to manage pain and discomfort for people with communication or cognitive difficulties.

For the MND Association the results will help focus future healthcare research and help support our campaigning for more funds for palliative and end of life care. Announcing the top 10 priorities for research is the start of a long process. I hope that it gives people with MND today a sense that their battles are being recognised, they’re not alone and that we’re all working together to ensure that better care is available. Continue reading

On the tenth day of Christmas MND research gave to me: Ten research studies we helped promote in 2014

“On the tenth day of Christmas MND research gives to you… TEN research studies we helped promote and recruit for in 2014”

IMG_2041Last year we helped promote and recruit people living with MND to take part in 10 different studies.

From biomarker studies, to survey’s on the risks v benefits of new medicines, we covered a number of different opportunities for people living with MND to get involved in research!

The TONiC study and the ALS biomarker study are still recruiting and tissue donation is open all year round! To stay up to date on the latest opportunities to get involved in research you can visit our website or subscribe to our research specific newsletter.

Alternatively, if you are living with MND you can join our MND Research list. Should a research opportunity become available in your area we will then contact you with details, including how to take part. Find out more.

What should be top of palliative and end of life research To Do list?

At the beginning of the week, the Palliative and End of Life Care Priority Setting Partnership (peolcPSP) launched a survey. Its aim is to help those with a passion for finding answers in the neglected area of palliative care research work out what should be top of their To Do lists. The MND Association is one of the partners in the project led by Marie Curie Cancer Care and supported by the James Lind Alliance.

We’re asking people with MND, their families and carers, healthcare professionals and clinicians to rate a set of 83 questions. For each question you can say whether you think it is a low or high priority for research.  Continue reading