Developing the Biomarkers in Oxford Project

Biomarkers in Oxford (BioMOx) is a research project with the aim of identifying a diagnostic biomarker for MND, which could be used to track the progression of this condition.

What are biomarkers?

The aim is to identify biomarkers, or ‘biological fingerprints’ for MND. This could be through testing blood and spinal fluid (CSF) samples from people with MND, or using MRI scans and other imaging techniques to look at changes in the brain.

By understanding the very earliest changes detected in these samples at the start of MND (the biomarker), it is hoped that they could be used to work towards disease prevention and to develop more targeted therapy for those already affected by MND.

For example, including a biomarker element in future clinical trials will help us learn more about the disease and identify participants most likely to benefit from the drug being tested.

Being able to track the progression of the disease could also help with effective care-planning for people with MND. 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

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

Take part in TONiC

Tonic-Logo-1189x841The MND Association funds healthcare research that aims to improve care management for people living with MND.

The TONiC study is looking at factors that influence quality of life, and is inviting people living with MND to take part in the next phase of the project.

What is TONiC? 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.

Have your say about research priorities

The relative of a close friend of mine is seriously ill with cancer. Supporting my friend and hearing of how their relative is, brings back memories of people close to me that have died. It brings back memories of what happened to them, how it affected me and my family. At the same time I find myself thinking – how would I react to approaching the end of life – would I want to know everything, perhaps I would want to concentrate on living and not think about dying too much?

Either as a relative or someone who has a condition, some of us would be on Google or talking to those around us, looking for answers and reassurance. For some of those questions there aren’t any answers available. Perhaps you can’t or couldn’t find the answers either?

Continue reading

Twitter and MND

With over 140 million active users Twitter has grown up a lot since it arrived in 2006. This means that Twitter can be an extremely powerful tool for engaging, influencing and reaching out to a wide range of audiences across the world.twitter-bird-blue-on-white

Twitter is a social network (like Facebook and Google+) which allows you to network and engage with other users.

Anyone who knows me is well aware that I am a very keen advocate of Twitter. I believe Twitter is an excellent tool for engaging with, and getting people excited about science.

As a researcher Twitter can be used to promote and publicise your research (without having to travel to international conferences) and it also enables the public to raise awareness of important issues (like MND awareness month) and engage with the scientific and research community (@ALSuntangled)

As a researcher, Twitter can be used to promote and publicise your research (without having to
travel to international conferences) and find out what’s going on in your field – ‘listening rather than talking’ to your peers.
For more examples of why researchers should be using Twitter please see the post on our Research and Care Community Blog (ReCCoB) ‘Why you should be using Twitter’

Get involved

Our ‘Get Started on Twitter today!’ blog post also on ReCCoB explains how to join Twitter in five easy to follow steps. It covers everything from picking a name, deciding who to follow and sending your first tweet!

To get you started here’s some good examples of Twitter accounts to follow:

It’s OK to ask about MND research

The National Institute for Health Research (NIHR) has launched their ‘It’s OK to ask campaign’ which encourages patients and the public to ask about clinical research.

The campaign was launched on Monday (20 May 2013), ‘International Clinical Trials Day’ and the NIHR will be promoting this campaign throughout 2013/14.

“Clinical research is the way in which we improve treatments in the NHS. In many cases doctors will tell patients about research but we also need patients to ask about it and keep research at the top of the NHS agenda.” – NIHR website

Get involved in MND research

Mo LeCule the MND meerkat

Mo LeCule the MND meerkat

The NIHR is promoting the fact ‘it’s OK to ask about research’ and encourages patients or the public to ask their doctors about current research opportunities. The MND Association has a section on their website that lists ‘current opportunities to get involved in MND research’ and you can find out more here.

Getting involved in MND research does not only mean taking part in clinical drug trials. There are a number of other ways you can help including; questionnaires, tissue donation and fundraising.

“Last year, more than half a million NHS patients chose to take part in nearly 3,000 clinical research studies. Thanks to those patients, we are learning more all the time about how to deal with a whole range of medical conditions – and make some real breakthroughs that will improve thousands of lives.” – NIHR website

Share your experiences

The ‘It’s OK to ask’ campaign is encouraging patients or the public to share their experiences including what they asked and what response they received, via Facebook, Twitter (@OfficialNIHR #NIHRoktoask), phone: 0300 311 99 66 or email: oktoask@nihr.ac.uk