In the December issue of The News we reported the results of the HeadUp neck collar (previously known as the Sheffield Snood), a cervical orthosis specially designed for people with MND. We are happy to announce that the collar should be available from April through the NHS, or direct from the manufacturers TalarMade. In case you missed the last issue, you can read more about this innovative aid on this blog.
In July last year, we reported that the first participant to the MIROCALS Phase II clinical trial had been recruited in France. As of 8th January 2018, 56 people living with MND (plwMND) had been screened and recruited into the study.
All of the volunteers have had baseline blood and lumbar puncture samples taken. Of these, 14 subjects have completed the 3 month ‘run-in’ period to check their tolerability to riluzole, and have undergone a second lumbar puncture. They have now been blindly randomised to low dose Interleukin-2 (IL-2) or placebo, in equal proportions. Blindly randomised means that the participants don’t know whether they are taking the trial drug or a placebo.
MIROCALS (Modifying Immune Response and Outcomes in ALS), is partly funded by the Association. The trial will test whether low doses of the drug IL-2 can alter aspects of the immune system, which may play a role in the speed at which ALS progresses. The trial is also providing the opportunity to confirm the usefulness of recently identified disease biomarkers, whilst also looking for new and more effective biomarkers.
It is hoped that the recruitment of plwMND will be completed by the end of 2018, providing recruitment rates are increased, and the results of the trial are expected in autumn 2020.
The MND Register of England, Wales and Northern Ireland is a research study funded by the MND Association. The purpose of the MND Register is to create a database to collect and store information about every person with MND in the UK.
As of 16 January 2018, 600 people had been recruited to the Register. Ethics approval has also been obtained for self-registration and 20 people have taken advantage of this via the self-registration website.
Following feedback from a participant who found challenges using eye gaze with the self-registration option on the website, an issue with the drop down menus was identified. These menus have been replaced with radio buttons to resolve this problem and we will now begin to promote this route of participation.
The information gathered in this project will help plan the care for people living with MND and tell researchers more about what might be causing the disease. Information such as gender and ethnicity can be used to look for characteristics of people more likely to develop MND.
People with MND can take part in the study via the project website, or may be invited to take part during an appointment at their MND clinic.
In 2014 the Association began funding the UK component of Project MinE. Devoted to discovering the genetic cause of MND, experts in 19 countries are aiming to analyse the DNA of 15,000 people living with the disease, together with the DNA from 7,500 healthy controls. The aim is to identify which genes increase or decrease the risk of developing MND. Ultimately, this means researchers will be able to further ‘untangle’ the mechanisms which underlie MND and develop potential treatments.
Globally, researchers have so far decoded the DNA of 10,000 people. Using tissue from the MND Collections, the UK team have provided data of 1,800 people living with MND. To put the size of this project into perspective: Google recently made an announcement that the video and photo uploads from the entire world would require 12.5Pb of storage (a petabyte or Pb is the equivalent of one trillion bytes). The Project MinE database will require 22.5Pb of storage. That’s an awful lot of information!
Using the data already collected, researchers have found that lithium carbonate may increase the lifespan of those with the UNC13A gene. Following this promising finding, a new European clinical trial is being planned.
And there’s more! At the 28th International Symposium in December, Project MinE researchers revealed the discovery of three new genes that are linked to MND. These discoveries open up new avenues of research into the causes of MND and we eagerly await the next results from Project MinE.
It’s hardly surprising that studies show almost half of people diagnosed with MND experience depression and almost a third experience anxiety, yet there is very little guidance on how to best address these symptoms. As a result, formal psychological support is not routinely offered and where it is, the particular approach taken is based on best judgement rather than robust evidence.
In 2016 the research funding arm of the NHS asked for projects to specifically look into the ‘Clinical impact and cost effectiveness of interventions to improve the psychological health of people with MND’. The result was a major new therapy research trial, led by Dr Rebecca Gould of University College London and Professor Christopher McDermott of University of Sheffield, which started in December 2017.
The COMMEND study will focus on a technique known as Acceptance and Commitment Therapy (ACT), which has been shown to be beneficial in chronic conditions.
The trial will be split into two parts. The first part will focus on developing an ACT intervention specifically tailored to the needs of people with MND. This will then be tested for ease of use and appropriateness. The second part will consist of a randomised trial of almost 200 people with MND to find out whether ACT can improve psychological health and quality of life.
We are looking to actively promote this trial.
The Research Development team be reached by phone 01604 611 880 or by email on firstname.lastname@example.org. If you’d like to chat about any of these articles, please get in touch.