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Virtual support program for caregivers of people with motor neuron disease

A Virtual Peer-to-peer Support Programme for Family Caregivers of Individuals with Motor Neurone Disease At Risk of Becoming or Currently Technology-dependent: Randomised Controlled Trial

NA · King's College London · NCT04695210

This study tests a virtual support program to help family caregivers of people with motor neuron disease share experiences and find emotional support while caring for their loved ones at home.

Quick facts

PhaseNA
Study typeInterventional
Enrollment154 (estimated)
Ages18 Years to 100 Years
SexAll
SponsorKing's College London (other)
Locations25 sites (Bedford and 24 other locations)
Trial IDNCT04695210 on ClinicalTrials.gov

What this trial studies

This program aims to provide virtual peer-to-peer support for family caregivers of individuals with motor neuron disease (MND) who are living at home. It recognizes the significant burden and psychological distress faced by caregivers due to the complex needs of MND patients, particularly those requiring advanced medical support. By facilitating connections among caregivers, the program seeks to offer practical and emotional support, helping them navigate the challenges of caregiving. Participants will engage in virtual sessions to share experiences and strategies, enhancing their coping mechanisms and overall well-being.

Who should consider this trial

Good fit: Ideal candidates are family caregivers aged 18 and older who are caring for individuals with MND living at home and are involved in advanced medical support.

Not a fit: Patients who are actively receiving psychiatric or psychological care may not benefit from this program.

Why it matters

Potential benefit: If successful, this program could significantly improve the psychological well-being and support network of caregivers for individuals with MND.

How similar studies have performed: While there is limited data on similar interventions specifically for MND caregivers, peer support programs have shown promise in enhancing caregiver well-being in other chronic conditions.

Eligibility criteria

Show full inclusion / exclusion criteria 
Inclusion Criteria:

1. age ≥ 18 years;
2. family/informal caregiver of an individual with MND living at home who is referred for consideration or receiving any of the following i.e., entering King's clinical staging Stage 4A: nutritional support; or Stage 4B: respiratory support \[51\]:

   1. assisted ventilation
   2. cough assist
   3. gastroscopy and enteral feeding
3. able to speak/read English;
4. has access to a computer, tablet, or smartphone and the internet (we have the ability to provide loan 4G enabled tablets if required); and
5. consents to participation

Exclusion Criteria:

1\. Actively receiving psychiatric/psychologist care identified through self-report.

Where this trial is running

Bedford and 24 other locations

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.

View on ClinicalTrials.gov →

Conditions: Motor Neuron Disease, Amyotrophic Lateral Sclerosis, caregiver

Last reviewed 2026-05-15 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.