Setting up the MND Register for England, Wales and Northern Ireland
Last Reviewed 15/09/2017
By Belinda Cupid, Head of Research, MND Association
How many people are there living with Motor Neurone Disease in the UK? If you look at the infographic on the MND Association’s website, then you’ll see a figure of 5,000 quoted. In reality this is an estimate. Albeit it is a scientific estimate, from an extrapolation of actual collected data, but an estimate nonetheless. For the MND Association, it was the attraction of being able to more accurately plan care provision for people with MND, and to give MND researchers a solid basis for epidemiological research, that finally made us agree to consider proposals for funding a population register.
In 2013 we invited applications for funding to create the MND register – to complement existing MND registers around the world (including the MND register in Scotland and another in the Republic of Ireland, hence this one covers England, Wales and Northern Ireland). After several rounds of (peer) review and (Board) approval the project could begin. In September 2014, our grants team sent out two research grant offer letters, one addressed to Professor Ammar Al-Chalabi and the other to Professor Kevin Talbot, based at King’s College London and Oxford University respectively. Together they are the co-Principal Investigators on this project. Included in the five years funding were two part-time posts, one at each centre making up to a full time equivalent project manager, and funding for a part time computer programmer.
Objectives of the MND Register project
The aim of the project funding was to establish the register, building on the existing infrastructure of a network of MND clinics around the UK and creating a self-registration website so everyone around the country could take part. In the shorter term the information on numbers of people with MND around the country will provide valuable information for planning care, and evidence for influencing and campaigning where care provision is poor. In the longer term it will give us accurate data on two important building blocks of epidemiology research – incidence and prevalence figures for MND. From there we can build on the foundations and ask people to allow us to collect the results of clinical tests, perhaps give us a DNA sample, or complete an environmental and lifestyle questionnaire. All this will tell us more about who and why people develop this devastating condition.
Nearly three years in
Explaining progress in a healthcare research project is very much like a swan elegantly swimming across the lake, the hard numbers of people with MND who have agreed for the researchers to store their data, and in how many centres these people were recruited from really doesn’t tell the whole story. The numbers represent three years of hard work – three years of madly paddling underneath the water. Over 500 people have currently given their consent to take part in the Register and more than ten hospitals are now actively recruiting participants at their MND clinics.
To get this far, three members of staff have been recruited, and many steering group teleconferences, monthly teleconferences and face-to-face meetings of the management group have taken place. The team have worked hard at sharing information about the project online, in newsletters and to people affected by MND. As well as the usual ethics and Research and Development approvals they’ve put data transfer agreements in place between the hospital where the data are collected and where it will be stored. They’ve also worked out the best way to securely share and store such sensitive data.
In the next few months we hope to launch the self-registration website, so people with MND can agree to take part in the MND Register by completing a form online. (We have a secure way of spotting if someone takes part via the website and agrees in the clinic too!). We’re in discussions with a further 15 MND clinics about taking part in this project. We’re hopeful that these will be recruiting people with MND in a year’s time. In the meantime it is important that the research team, and colleagues and volunteers across the MND Association use our collective contacts to let all people with MND know about the project. We hope that it will tell us how many people there truly are living with MND.
There’s been a lot to think about to get as far as we have but we’re looking forward to reaping the benefits of improving care for people with MND and learning more about what causes MND.