RecruitingOBSERVATIONAL

Telehealth in MND-Research (TIM-R): A Research Database for MND

The TiM-Research study is building an online database to help people with Motor Neurone Disease (MND) in the UK get involved in research from home. It's a simple way to find out about different research studies and decide which ones you'd like to join. You might fill out questionnaires to help researchers understand MND better, provide samples like saliva, or share your experiences in interviews. You'll also get updates on what researchers are finding. This platform makes it easier for people with MND to contribute to vital research, helping to improve understanding and discover new treatments for this condition. Your involvement could make a real difference.

At a glance

Status

Recruiting

Sponsor

University of Sheffield

Enrolment target

1,000

Start

14 Dec 2024

Estimated completion

14 Dec 2074

MND (Motor Neurone DIsease)

What is this study about?

This research project, called TiM-Research, is all about creating an easy-to-use online system for people living with Motor Neurone Disease (MND) in the UK. MND is a condition that gradually weakens muscles, affecting movement, speech, and swallowing. Finding out more about MND and developing new treatments is really important, but it can be hard for people with MND to travel to different places to take part in studies.

That's where TiM-Research comes in. It brings lots of different MND research studies together in one secure online space. This means you can look through the opportunities available, learn what's involved, and choose to take part in the studies that interest you, all from the comfort of your own home. Your contributions will help researchers understand how MND progresses and gather valuable information that could lead to better care and new therapies.

This project builds on the success of an earlier system, TiM-Care, which allowed people with MND to report their symptoms to their doctors online. TiM-Care was designed with input from patients and carers, meaning it's easy to use even for those with significant difficulties. TiM-Research aims to offer the same user-friendly experience for research participation, making it simpler for you to contribute to and benefit from the latest MND research.

Key takeaways

Join MND research from home in the UK.
Choose which studies interest you.
Potentially fill out questionnaires or provide samples.
Help advance understanding of MND.
Information kept secure and private.
You can stop participating at any time.

Who may be eligible?

To join the TiM-Research platform, you need to be living with Motor Neurone Disease (MND).

You also need to be based in the United Kingdom. There isn't a specific age limit, so people of all adult ages can take part.

Finally, you'll need access to a computer, phone, or tablet with an internet connection to use the online platform. A family member or carer can help you use the system if needed.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Do I have Motor Neurone Disease (MND)?
Do I live in the United Kingdom?
Do I have access to a computer, phone, or tablet with internet?
Can I use the internet, or can a family member/carer help me?

Answer every question to see your result.

What does participation involve?

If you decide to join TiM-Research, you'll sign up online. Once you're part of the platform, you'll receive information about various research studies suitable for people with MND. You can then choose which studies you want to take part in; there's no pressure to join all of them. These studies might involve filling out online questionnaires about your symptoms or daily life, providing biological samples like saliva (arrangements for collection would be clear), or taking part in interviews or group discussions about your experiences. How long you participate in each study will vary, but you have control over what you join. You'll also receive updates on research findings from the UK MND Research Institute.

Potential risks and benefits

The main benefit of joining TiM-Research is that it offers an easy and convenient way for you to contribute to important MND research from home, helping to advance our understanding and potentially discover new treatments. You'll also stay informed about the latest research findings. There are no anticipated physical risks as part of joining the platform itself, as it primarily involves sharing information and choosing to participate in other studies. Your personal information will be kept secure and confidential. Remember, you can choose which studies to join and you are always free to withdraw from the platform at any time without giving a reason, and it won't affect your medical care.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

University of Sheffield
Verified postcode
Sheffield, United Kingdom· Recruiting

Common questions

What is TiM-Research?

It's an online platform that makes it easier for people with MND in the UK to find and take part in research studies from home.

What kind of research will I be involved in?

You might fill out questionnaires, provide samples like saliva, or share your experiences in interviews. You choose which studies you want to join.

Do I have to take part in everything?

No, you only choose the studies you're interested in. You have full control over your involvement.

Is my information safe?

Yes, all your information will be kept secure and confidential.

How do I sign up?

You can visit the website www.bit.ly/ukmndri-Tim-R to find out more and sign up.

How to find out more

Liam Knox, PhD

l.knox@sheffield.ac.uk +44 114 222 2291 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.