MiNDToolkit Online

MiNDToolkit is a novel psychoeducational research platform

Developed to support carers in the management of behavioural changes in Motor Neurone Disease. We are currently investigating if this platform is acceptable to families and healthcare professionals. We are also investigating if we would be able to run a larger research trial to test the platform efficacy in supporting carers in the future.

Behavioural changes

Up to 50% of people with MND experience behavioural changes

Carer support

Behavioural changes are associated with greater burden in carers

Multifaceted platform for management of behavioural changes in Motor Neurone Disease

Carers

such as family members, friends, paid carers can have access to a personalized symptom management plan for the duration of the research study

Healthcare professionals

can access training for management of behavioural symptoms to support carers and improve their practise

Researchers

monitor and manage the MiNDToolkit research study in the background

Integration

the MiNDToolkit brings together carers and healthcare professionals into one platform

F.A.Q

Frequently Asked Questions

How do I get involved in this research study?

Please contact our research team: mindtoolkit.study@uea.ac.uk
How long is this study for?

Approximately 3 months
Is this study for the person with MND, or the carer, or both?

The MiNDToolkit was designed to support the carer directly (e.g. family, friends or paid carers). Only the carer can be recruited to the study but participation in the study will, in future, also benefit the person diagnosed with MND
Can any carer of a person with MND take part?

Unfortunately not. Because this is a research study, the MiNDToolkit is not available to everyone yet. We are still testing it to see if the MiNDToolkit is acceptable and useful to carers and healthcare professionals. At this stage of the research, we will need to check if the clinical team closest to you have been trained and are involved in the research study. Please contact us and we can make those checks.
I am a healthcare professional interested in the MiNDToolkit. Can I use it?

Unfortunately you cannot use the MiNDToolkit as a clinical toolkit yet, but we may be able to include your work place as a research site in the study.
Please contact the Chief Investigator for an initial conversation. Prof Eneida Mioshi: e.mioshi@uea.ac.uk
Can I be a principal investigator in the study?

We may be able to include your work place as a research site in the study.
Please contact the Chief Investigator for an initial conversation. Prof Eneida Mioshi: e.mioshi@uea.ac.uk
Is the MiNDToolkit trial registered?

Yes, the MiNDToolkit study is registered with: ISRCTN