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Changing bowel habits in people with MND

  • Research type

    Research Study

  • Full title

    Do the bowel habits of people living with MND change during the course of their illness?



  • Contact name

    Jan Clarke

  • Contact email

  • Sponsor organisation


  • Identifier

    Z6364106/2016/04/08, UCL Data protection

  • Duration of Study in the UK

    2 years, 0 months, 6 days

  • Research summary

    Motor neurone disease (MND) or amyotrophic lateral sclerosis as it is otherwise known, is a progressive neuro-degenerative disease of uncertain aetiology. It is characterised by loss of upper and lower motor nerves that results in a devastating loss of muscle strength and concurrent paralysis. The incidence of MND is 2 per 100,000 of the population per year. The median age of onset is 67 years. MND is a terminal disease with death usually attributed to respiratory failure. Fifty percent of people with MND die within three years of onset of symptoms. Currently there is no known cure.

    Although MND is a disease essentially of motor nerves there is also evidence that it gives rise to changing bowel habits. However, the aetiology of this is issue is not well understood but is thought to be attributed to immobility, dehydration and dietary changes. Alteration in bowel motility may be an intrinsic element of MND in a minority of patients. However, there are no studies that have explored this further.

    This study therefore seeks to pilot and develop methods to better identify the issue of changing bowel habits amongst people living with MND. A prospective approach will be used to identify MND patients and record their usual and current bowel habits, and examine how change in bowel habit relates to disease progression using the ALSFRS-R functional rating scale and forced vital capacity. The planned outcome of the study will be to provide a clearer understanding of the presence of changing bowel habits in this patient group, how this may differ by stage of disease and how this impacts on their daily life. This will be used to inform future multidisciplinary care of MND patients.

  • REC name

    London - Surrey Borders Research Ethics Committee

  • REC reference


  • Date of REC Opinion

    22 Aug 2016

  • REC opinion

    Further Information Favourable Opinion