Clinical Research Directory

MND Together: Phase 1

This project consists of two workstreams, both of which will be mixed-methods and aim to develop a national UK picture of current care coordination for people with MND, including observations of barriers and facilitators. The studies will explore how care is transferred and communicated across MND specialist services to non-specialist community health settings. In workstream 1, the researchers will conduct focus groups with people with MND, Carers, former Carers, Health and Social Care Professionals and managers and commissioners. These focus groups, alongside the analysis of routine data, will create a national picture of MND care and begin a behavioural diagnosis of the barriers and facilitators. In workstream 2, a multi-site ethnography study will be conducted, including observations, interviews, routine data, care plan and document review. This Workstream will observe how care is coordinated between specialist and non-specialist services and continue to explore barriers and facilitators that can not be identified through interviews.

ALS/MND Natural History Study Data Repository

This is a data repository for multi-site multi-protocol clinic-based Natural History Study of ALS and Other Motor Neuron Disorders (MND). All people living with ALS or other MNDs who attend clinics at the Study hospitals (sites) are offered to participate in the Study. The Sites collect so-called Baseline information including demographics, disease history and diagnosis, family history, etc. At each visit, the Sites also collect multiple disease-specific outcome measures and events. The information is captured in NeuroBANK, a patient-centric clinical research platform. The Sites have an option to choose to collect data into 20+ additional forms capturing biomarkers and outcome measures. Captured data after its curation are anonymized (all personal identifiers and dates are being removed), and the anonymized dataset is shared with medical researchers via a non-exclusive revocable license. Funding Source - Biogen, Inc.; Mitsubishi Tanabe Pharma America; FDA OOPD.

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

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.

Emotion Processing Among Patients With ALS

The goal of this observational study is to learn about the emotional perception in people with ALS disease compared to people with other neuromuscular disease and healthy controls. The main questions it aims to answer are: * How people with ALS judge happy and angry faces and what their "insight" into these judgements are like * How their autonomic responses differ from the other two test group Participants will asked to judge if a face presents a happy emotion or angry emotion. Researchers will compare the ALS group responses with neuromuscular diseases group and healthy control group responses to see if the ALS group judge more happy faces than angry.