Join MND Research
Join MND Research is a free way for people living with MND, and their family or friends, to track symptoms remotely and feed real, day-to-day data straight into research. This helps our scientists understand the disease better and design smarter clinical trials, wherever you live.
Join MND Research (previously known as TiM-R) is a secure online and app-based platform built for remote data collection in MND research. After signing up, participants can complete short, regular questionnaires from home, such as the ALSFRS-R functional rating scale, to build a detailed picture of how their symptoms change over time. That picture is far richer than the occasional snapshot a clinic visit can offer, because it’s continuous, and it comes from wherever someone actually lives, not just from people able to travel to a specialist centre.
Researchers can then use this real-world data on its own, or link consenting participants into specific studies and trials, without everyone needing to attend a research site physically. More than 100 people have already joined; the goal is to grow that to 1,000, because the more people take part, the more statistically powerful and representative the resulting research becomes.
Why does this matter?
MND is rare and highly variable; no two people’s disease progresses in quite the same way. That variability is exactly what makes MND hard to study and hard to treat: a trial can fail not because a treatment doesn’t work, but because the data behind it wasn’t detailed or frequent enough to show a real effect. Remote, continuous symptom tracking, at scale, helps researchers see patterns that occasional clinic visits can’t capture, and it means people who can’t easily travel to a research centre because of distance, mobility, or how they’re feeling on a given day aren’t excluded from contributing.
What could this mean?
The more people who join, the more powerful and representative MND research becomes, not just for the studies running today, but for future trial designs and treatment targets. Every questionnaire submitted adds to a growing, real-world dataset that researchers across the UK MND RI network can draw on, accelerating the search for effective treatments.
Who is leading this research project?
Join MND Research is led by Chief Investigator Professor Chris McDermott and lead researcher Dr Liam Knox, based at the Sheffield Institute for Translational Neuroscience (SITraN).
More information
How do I join the platform?
If you live with and want to join the Join MND Research platform, you can learn more here. You’ll be asked to provide basic information, such as your email address and name, create a password, and you’ll be all set. Once registered, you’ll receive more information about ongoing studies and can choose to participate in research that interests you.
If you have MND and would like to join the research platform, please click here.
You will then receive an email to create a password, and then you will have access to the platform. You will then be asked to read the participant information sheet and provide consent to Join MND Research before you receive any invitations or questionnaires.
How can researchers use Join MND Research?
If you are a researcher and would like to utilise Join MND Research in any way, be sure to get in touch with us at tim-r@sheffield.ac.uk as soon as possible. We welcome any research teams interested in using Join MND Research to signpost studies, directly recruit participants, or collect data (or a combination of all three). can be modified to fit any study design, and we welcome any collaboration. If you want to use the anonymised questionnaires that Join MND Research collects, you can apply for access.
Does Join MND Research have ethical approval?
Yes. Join MND Research has received full NHS ethical approval as a research database (reference number: 24/SW/0054). This approval includes the system inviting users to research studies and analysing data from regular questionnaires to help us better understand MND.
Do NHS Trusts need to be set up as research sites or PICs to discuss Join MND Research with people with MND?
No. As NHS Trusts are only involved in signposting people with MND to Join MND Research and do not screen or take consent from participants, the Health Research Authority (HRA) advises that this does not require a complete study setup at each location.
I’m interested in signposting people with MND to Join MND Research; what do I do?
We have created leaflets and information to explain Join MND Research to potential users, which we can email you or post physical copies to for people with MND. If you would like to receive these, please email Dr Liam Knox (L.knox@sheffield.ac.uk).
The leaflets and website are easy to understand, so providing them to people with MND should take no more than a few minutes. Currently, these are still branded as TiM-R, but we hope to update these soon.
If users consent to a study on Join MND Research, who gets the research accruals?
The HRA has confirmed that you can receive accruals for people with MND in your area who consent to a Join MND Research study. We can manually upload the number of participants from your site to CPMS, so you don’t lose any research activity as a result of Join MND Research.
