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. Read the rest of this entry »

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.  Read the rest of this entry »

Developments in BioMOx

Medical Research Council (MRC)/ MND Association Lady Edith Wolfson Senior Clinical Research fellow, Dr Martin Turner writes about recent developments in his BioMox study.

Dr Martin Turner, MRC/MND Association Lady Edith Wolfson Clinical Research Fellow

Dr Martin Turner, MRC/MND Association Lady Edith Wolfson Clinical Research Fellow

My first ever blog. I decided to share developments in ‘BioMOx’ – the Oxford Study for Biomarkers in MND, which has been funded through the MND Association’s pioneering Lady Edith Wolfson Fellowship scheme (in conjunction with the Medical Research Council).

About BioMOx

Between 2009 and 2013, over 70 people living with MND (and some healthy people of similar age for comparison), took part in a new type of patient-based study. Men and women of all ages (from 28 to 86), some with primary lateral sclerosis (PLS) as well as a range of the more common amyotrophic lateral sclerosis (ALS) types, all gave up their time to attend for a day or two of tests in Oxford. Read the rest of this entry »

Taking part in BioMOx..

To end volunteer week, Katy Styles, who is a Campaigns contact for the East Kent Development Group of the MND Association, blogs about her and her husband Mark’s experience of volunteering to take part in the Biomarker’s in Oxford (BioMOx) study.

It started as an innocuous question following a neurology appointment at the Oxford MND Care Centre, Mark and I asked “Now what can we do for you?”

Following a phone call and some form filling, Mark and I had volunteered to take part in Dr Martin Turner’s BioMOx Project. Mark as a person with MND and me as a control of the same age.

We didn’t know what to expect as we were scheduled to take part in two days worth of tests, which included two scans and a written test. In between time in the scanners however, we were able to enjoy everything Oxford has on offer. Read the rest of this entry »

A healthy control – Dr Scott Allen

Dr Scott Allen is a Senior Post Doctoral Researcher at the Sheffield Institute for Translational Neuroscience (SITraN). Here he blogs about his experience as a research volunteer in an MRI scanner.

Today, as part of on-going work by Doctor Tom Jenkins and Prof Pamela Shaw at the Sheffield Institute for Translational Neuroscience (SITraN), I volunteered as a healthy control to have a full body MRI scan.

Mitochondria and MRI

Tom’s work is very similar to my own; he aims to determine whether there are differences in the way that people with motor system disorders produce energy compared with healthy volunteers. Mitochondria are known as the “powerhouses” of human cells and produce energy. Tom wants to find out whether there is evidence for abnormal function of these mitochondria by doing magnetic resonance imaging (MRI) scans of the brain. Read the rest of this entry »

Flying towards understanding: MND, TDP43, flies and a competition

Dr Frank Hirth King's College London

Dr Frank Hirth, King’s College London

The MND Association has funded a number of research projects in the laboratory of Dr Frank Hirth at the Institute of Psychiatry, King’s College London. His area of expertise is in using fruit flies to understand how motor neurones die in MND.

There is an opportunity to read a summary of some of his work through an online competition. The article is called ‘The TBPH gene – do neurodegenerative disease have a fly in the ointment’ and it is has been shortlisted forThe People’s Choice award , as part of the Access to Understanding competition.

Please go online, read the article, ‘like it’ and add any comments you’d like to, until a deadline of 12 noon on 24 March.

A background (but hopefully not a spoiler!) to this summary and the competition is given below:

Read the rest of this entry »

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