Attached is a letter to MND researchers from a patient with motor neurone disease, which I invite you to take a few moments to read and consider., which I invite you to take a few moments to read and consider.
It is written from a patient who has been a valued member of the SMND RAG until recently, when he took the difficult decision to step back from the group due to his deteriorating speech and finding it difficult to communicate. The thing he really enjoyed as a member was having interactions with researchers and other members of the group, which was becoming increasingly difficult and frustrating for him, and he didn’t feel he would get the same enjoyment by providing written feedback.
When he got in touch to let me know he was stepping down, he included “a final thought to MND researchers”, which I found incredibly inspiring and motivating. At the end of what had felt like a tough work day – it put things in perspective and reminded me what I love about my job, and made me want to give that bit more to do everything I can to drive research forwards …
This is now an open letter to all MND researchers – a call-to-arms, if you like – to be shared far-and-wide. I hope that you can take a few minutes to pause and consider how important your research is, and that his powerful words inspire and motivate you to drive your research forwards as far and as fast as you can.
Please do share it with your colleagues – clinical and lab-based MND researchers, technicians, admin, managers, all other support roles… we are all essential to making meaningful progress to translate into patient benefits.
Very best wishes, Stacy Young, Chair of the SMND RAG
The study is recruiting patients with MND and other neurological conditions, as well as healthy individuals with or without a family history of MND. All study activities can now be completed entirely remotely (consent, questionnaires, providing biosamples using simple at-home collection kits), meaning that no visits to the study site are required. This adaptation allows patients to take part in research regardless of whereabouts in the country the live, and reduces patient burden by not requiring them to travel to study sites.
The University of East Anglia is conducting an online survey to examine the impact of the Covid-19 pandemic on people with motor neuron disease, and are looking for people living with MND to help. Please click here for further information and a link to the survey
The MND CSG’s mission is to bring together the expertise and enthusiasm to develop and improve both the quality of MND research in the UK, and the number of research studies available for people living with MND to participate in nationally. The Group currently includes 36 members with leading MND neurologists, palliative care specialists, patient and carer representatives and other healthcare professional with an interest in MND clinical research.
Explore the clinical studies going on across the UK, and help us to share this important resource with others that may find it useful.
Follow us on Twitter: @UK_mnd_CSG
Researchers are conducting a project to help optimise NIV for people with MND. They are conducting focus groups with healthcare professionals who are involved in recommending, supporting and/or delivering NIV to people with MND, and with stakeholders from third-party organisations such as the MND Association. The focus group will last around 2 hours and will explore the group’s views on the research findings and how best to translate these into improved clinical practice. To find out more information about the study, click here to see the recruitment poster and click here to go to the study web page.
The UK MND Clinical Studies Group, having reviewed the available evidence on the efficacy of edaravone, has agreed the following Position Statement:
The CSG believes a properly designed, randomised placebo-controlled phase 3 trial of oral edaravone is required to determine the treatment’s efficacy. UK MND CSG – oral edaravone position statement
The HighCALS study is conducting a survey for healthcare workers who are involved in the care of people with MND, to find out about how their nutritional needs are currently met.
The survey is open to any healthcare professionals who feel able to comment on this topic, including doctors, nurses, dietitians, speech and language therapists, occupational therapists, physiotherapists and care coordinators. It is accessible via the following link: link here and may take about 20 to 25 minutes to complete.
The purpose of this study is to develop a new form of psychological therapy called Acceptance and Commitment Therapy for improving emotional wellbeing in people with MND. We would like to see how acceptable this newly developed therapy is to people with MND, and whether it is possible to provide it in the NHS.
Acceptance and Commitment Therapy is a new form of psychological therapy that helps people to learn how to live with difficult or distressing thoughts, feelings or bodily sensations, while still doing things that really matter to them or being the type of person they want to be with MND.
Full information is available on the study page, here.
A research team including Prof Mary O’Brien from Edge Hill University, Prof David Oliver from the University of Kent and Prof Chris McDermott from the University of Sheffield are inviting people with MND to take part in a study looking at the way the diagnosis is told to people, the information they are given and if the process is in line with the Guidance produced by the National Institute for Health and Care Excellence (NICE). They are also looking for family members/caregivers of people diagnosed with MND to understand more about how the process is seen by them. It is hoped that the results will be published in scientific papers to enable neurologists, and others involved in health and social care, to be aware of the issues that are raised so that there can be improvements to care. The study has been reviewed and given ethical approval from Edge Hill University Faculty of Health & Social Care Research Ethics Committee.
You will be asked to complete a questionnaire asking about your (or your family member’s) experience of being told the diagnosis of MND. The questionnaire is web-based and can be accessed via the links below. If you would prefer a paper copy of the questionnaire, or for any other queries, please contact Prof Mary O’Brien, email@example.com (01695 650918).
Survey for people with MND: https://www.surveymonkey.co.uk/r/people-with-mnd-survey
Survey for family members/carers: https://www.surveymonkey.co.uk/r/family-carers-survey
HighCALS is a research programme aiming to help people with MND achieve a high-calorie diet. They are currently looking for MND healthcare professionals & those involved in commissioning / delivering services to take part in workshops across the UK during June 2018, to find out about how such needs are currently met in the NHS. Please see the flyer for full details: HighCALS workshops June 2018