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.
Up to 50% of people with MND experience behavioural changes
Behavioural changes are associated with greater burden in carers
Multifaceted platform for management of behavioural changes in Motor Neurone Disease
such as family members, friends, paid carers can have access to a personalized symptom management plan for the duration of the research study
can access training for management of behavioural symptoms to support carers and improve their practise
monitor and manage the MiNDToolkit research study in the background
the MiNDToolkit brings together carers and healthcare professionals into one platform
Frequently Asked Questions
How do I get involved in this research study?
The feasibility study has now been completed. If you would like to be updated regarding future research opportunities involving the MiNDToolkit, please contact the Chief Investigator. Prof Eneida Mioshi: firstname.lastname@example.org
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 carers were recruited to the study, but participation in the study will, in future, also benefit the person diagnosed with MND
Is the MiNDToolkit trial registered?
Yes, the MiNDToolkit study is registered with: ISRCTN
I am a healthcare professional interested in the MiNDToolkit. Can I use it?
Unfortunately you cannot use the MiNDToolkit as a clinical toolkit yet because the MiNDToolkit is still undergoing research scrutiny. But if you would like to be updated regarding future research opportunities involving the MiNDToolkit, please contact the Chief Investigator. Prof Eneida Mioshi: email@example.com
- How can I find out about the feasibility trial results?
Our research team
Eneida MioshiLead Investigator, UEA
Helen CopseyMND Specialist, Norfolk MND Care and Research Network
Michael HornbergerCo-Investigator, UEA
Lee ShepstoneCo-Investigator, UEA
Emma FlanaganJunior Manager, Norwich Clinical Trials Unit
Polly-Anna AshfordSenior Manager, Norwich Clinical Trials Unit