The group's mission is to empower and enable patient and public involvement in motor neurone disorders research

How We Assist Research

This group assists researchers in ensuring that patients and carer’s views and needs are considered within Motor Neurone Disorders research areas.

It aims to:

  • Enable the patient and carer’s perspectives to be heard, which might otherwise be overlooked
  • Provide knowledge for the researchers from the individual’s experience and contribution
  • Identify and prioritize research topics that are important to patients
  • Improve recruitment to research studies
  • Help in identifying improved measures for research outcomes
  • Build public credibility and trust in clinical research, and improve external evaluations
  • Assist in identifying any barriers to effective involvement
  • Comment on research project documentation
  • Help write lay summaries for research proposals and Research Ethics Committees

Members of the group have experience of being on trial steering committees and have been involved in project design, development and implementation stages of research studies. Integrating public and patient involvement (PPI) into your research study can greatly increase your chances of getting a quality project through the funding, recruitment and dissemination of findings process.

Meet the Researcher

Your chance to get to know MND researchers a little better: our Meet the Researcher section includes interviews with SITraN scientists and clinicians.