Opti MND

• Research type

  Research Study

• Full title

  Optimising care pathways for families living with motor neurone disease

• IRAS ID

  333715

• Contact name

  Cat Taylor

• Contact email

  RGOsponsor@le.ac.uk

• Clinicaltrials.gov Identifier

  researchregistry10532., Full study Protocol

• Duration of Study in the UK

  1 years, 10 months, 31 days

• Research summary

  In the United Kingdom about 5000 people have Motor Neurone Disease (MND). The illness affects the brain and nerves meaning people may be unable to move their limbs and have difficulty speaking, eating, and breathing. Relatives or close friends (carers) play an important part in providing care. Many carers provide over 75 hours care a week. Carers often have expert knowledge of their relative’s needs and their specialised equipment. Often carers say they do not always feel supported in their role, and that sometimes there is a lack of joined-up communication across health and social care.

  The MND Association provide essential information to help patients and families. We are working with the MND Association in the research. We have a public advisory group of people who are current or former family carers of a person living with MND. They help us ensure that the research is safe and acceptable for families who can be physically and emotionally exhausted.

  This research aims to find out if different ways of providing MND care leads to different outcomes for family carers and the person living with MND. There are two ways we will do this.
  1. People with MND, carers and health and social care staff can complete a short online survey to tell us about their experiences

  2. Up to 25 patients and their carer from 5 different NHS hospital or specialised MND care centres will take part in a one-off interview. Up to 15 of these families will be part of a 12-month study. Across the year the researcher will observe communication between the family carer and healthcare staff on at least two occasions, and undertake a follow-up interview. We will also do one-off interviews with up to 30 health and social care staff who support families with MND.
  

• REC name

  London - Stanmore Research Ethics Committee

• REC reference

  25/LO/0700

• Date of REC Opinion

  11 Nov 2025

• REC opinion

  Further Information Favourable Opinion