TiM-R

• Research type

  Research Database

• IRAS ID

  340577

• Research summary

  Telehealth in MND-Research (TIM-R): A research database for MND

• REC name

  South West - Central Bristol Research Ethics Committee

• REC reference

  24/SW/0054

• Date of REC Opinion

  30 Apr 2024

• REC opinion

  Favourable Opinion

• Data collection arrangements

  This database aims to collect information about people with Motor Neuron Disease (MND), which can then be made available to support research that looks at causes, progression, and treatments.

  We will invite people with MND to register on Telehealth in MND-Research (or TiM-R for short). TiM-R is an online system developed with people with MND and researchers, and can be accessed through any internet browser or downloadable app on your phone, tablet or laptop.

  Once registered, users will be asked to complete regular questionnaires relating to a range of MND symptoms, mood, and wellbeing. Most of these questionnaires are sent once every two months and take a maximum of 45 minutes to complete at a time convenient to the user. Each questionnaire is voluntary.

  Users will also receive research news be invited to further studies that they may be eligible for through TiM-R. Users can take part in TiM-R and these additional studies regardless of where they live. It is their choice whether to participate in these other studies.

• Research programme

  This database aims to support research being conducted for/with people with Motor Neuron Disease. Projects using data from this database should be: ● MND-related studies that will facilitate and support the development of clinical care and advance the knowledge of healthcare professionals and researchers in attempting to find new treatments and methods of improving quality of life for people with MND. ● Studies looking for specific trends or correlations in the data, aiding in understanding of the disease progression and investigating potential therapeutic benefits or targets for future therapies.

• Research database title

  Telehealth in MND-Research (TIM-R): A research database for MND

• Establishment organisation

  University of Sheffield

• Establishment organisation address

  Sheffield Institute For Translational Neuroscience

  385a Glossop Road

  S10 2HQ