Telehealth in MND-Research (TIM-R): A Research Database for MND
ConditionMND (Motor Neurone DIsease)
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorUniversity of Sheffield
About this trial
The aim of this study is to implement the Telehealth in MND system as a research database allowing people with MND to take part in research and provide data remotely (TiM-Research).
TiM-Research is an online platform that helps people with MND in the UK take part in research. It brings MND research studies together in one place, making it quick and easy to learn about opportunities to get involved.
What's involved? Participants will receive information about a wide range of research studies that they can sign up for. This could include filling out questionnaires that help researchers understand how MND progresses, providing biosamples (e.g. saliva), or taking part in interviews and focus groups about their experiences. Participants can choose which studies they want to take part in. Participants will also receive updates on research results from the UK MND Research Institute.
Who can take part? People who live with MND and who are based in the UK can sign up for TiM-Research. To join, participants need a computer, phone, or tablet with an internet connection. A family member or carer can help. Participants' information will be kept secure and confidential.
How do participants sign up? Visit the website to find out more or sign up. www.bit.ly/ukmndri-Tim-R.
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
People living with MND
Living in the UK
Disqualifiers
None
Trial population
People living with MND in the UK
Trial design
Design model
Cohort
Time perspective
Prospective
Treatments tested in this trial
No intervention - Prospective cohort study
Other interventionNo intervention - Prospective cohort study
Treatment groups
No treatment groups listed
Trial outcomes
Primary outcomes
1
ALSFRS-r (Revised Amyotrophic Lateral Sclerosis Functional Rating Scale)
Functional rating of MND symptoms The ALSFRS-R consists of 12 questions, each scored from 0 to 4. Minimum Score: The lowest possible score on the scale is 0, representing the worst performance and a total loss of function across all assessed tasks. Maximum Score: The highest possible score is 48, which indicates a normal level of function. Scoring: A higher score on the scale is a better outcome, as it indicates a greater retention of physical function and a slower progression of the disease. A declining score signifies a worsening of the patient's condition.
Time frame
From enrollment, once every 2 months through study completion or participant withdrawal or death (average 2-5 years per participant)2
Coping Index-ALS
The Coping Index-ALS (CI-ALS) is a self-report measure used to assess coping abilities in people with amyotrophic lateral sclerosis (ALS). The CI-ALS is a 21-item scale that focuses on two key subscales: "coping by self" and "coping with others." Minimum and Maximum Values: The scale uses a nomogram to convert raw scores into interval-level measures, but the exact minimum and maximum numerical values of the scale are not consistently reported as a single, simple range like the ALSFRS-R. Instead, the focus is on the subscales and the overall pattern of scores. Scoring: A higher score on the CI-ALS generally means a better outcome. A high score indicates a greater use of adaptive, successful coping strategies, which are associated with improved well-being and, in some studies, even longer survival. The scale helps clinicians identify individuals with poor coping mechanisms so they can receive targeted support.
Time frame
From enrollment, once every 2 months through study completion or participant withdrawal or death (average 2-5 years per participant)3
EQ-5D-5L (EuroQol 5-Dimension 5-Level)
A generic measure of a person's health status. Scale Values and Scoring The EQ-5D-5L assesses health across five dimensions: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression. Each dimension is rated on five levels of severity. The scores can be interpreted in two main ways: 1\. The Descriptive System The descriptive system generates a 5-digit health profile (e.g., 11111 or 55555), where each digit corresponds to one of the five dimensions. Minimum Value: A score of 11111 represents the best possible health state, with "no problems" in any dimension. Maximum Value: A score of 55555 represents the worst possible health state, with "extreme problems" or being "unable to" in every dimension. Scoring: In this system, a lower score (i.e., a smaller number) indicates a better outcome.
Time frame
From enrollment, once every 2 months through study completion or participant withdrawal or death (average 2-5 years per participant)4
D-12 (Dyspnoea-12)
D-12 is a patient-reported questionnaire designed to measure the severity of breathlessness by assessing both its physical and emotional components. The D-12 consists of 12 items, each rated on a 4-point scale: 0 (none), 1 (mild), 2 (moderate), or 3 (severe). Minimum Value: The lowest possible score is 0, which indicates no breathlessness in any of the 12 domains. Maximum Value: The highest possible score is 36, representing the maximum possible severity of breathlessness. Scoring: A higher score on the Dyspnoea-12 indicates a worse outcome, as it signifies a greater severity of breathlessness and its associated physical and emotional impacts.
Time frame
From enrollment, once every 2 months through study completion or participant withdrawal or death (average 2-5 years per participant)Sponsors and contacts
Click on the lead sponsor to view all of their trials.
University of Sheffield
Lead sponsor
LifeArc
Collaborator
Source ClinicalTrials.gov