The future of clinical research in neurology must be driven by community voices

Strong patient partnerships are more important than ever. In the pursuit of a personalised future for neurological care, collaboration and co-creation should be at the forefront of all research and development. That way, everything we do for patients, we do with patients.

By working directly with each distinct community, made up of people with a certain neurological variance, their families, supporters, and advocates, it is easier to gather different perspectives and address unmet needs. The community should be included in important decisions about their health, particularly in the early stages of clinical trial design to ensure research is designed to address unmet needs and in a way that encourages participation.

“The first step is recognising that within many neurological conditions, the community is diverse. Continuing to work with these communities is therefore crucial to ensure that we understand their needs and work alongside them to create meaningful tools and resources.”
Caroline Averius, senior global patient partnership director, Roche

At Roche, this extends across Multiple Sclerosis (MS), Spinal Muscular Atrophy, Neuromyelitis Optica Spectrum Disorders, Alzheimer’s disease, and autism, among others. Research is based on first-hand insights gathered from within these communities, which helps inform the initial stages of clinical trial design and drug development. Their voices need to be heard to understand the evolving needs of each therapeutic area, emerging expectations, and gaps they experience within their care.

• Read the full article in pharmaphorum’s Deep Dive digital magazine