Patients’ Perspective on Neurology Clinical Trials: Gaps and Opportunities Towards More Meaningful and Inclusive Research
Objective:
To report the experience and advice of patients with neurological conditions who have participated in clinical trials with the aim to propose strategies to make research more patient centric, meaningful and flawless.
Background:
Most Phase 2 and 3 clinical trials in neurology face significant recruitment and retention issues and many patients are not interested in or don’t have access to clinical trials.
Design/Methods:
7 patients and 1 care partner living with Alzheimer’s, Parkinson’s disease and Multiple Sclerosis with prior experience in clinical trials participated in a 2-hour Advisory Council that covered the following topics: awareness on clinical research, ease of participation in trials, definition of meaningful outcomes and role of care partners in research. The Council discussed and agreed on key observations and recommendations.
Results:
Advisors identified the need to improve patients’ awareness on clinical research principles, as well past and ongoing clinical trials through online lay language platforms that also include patients’ testimonials, trials sites’ contact details and information on studies’ results. Patients recommended to further support ease of participation through optimal visits’ scheduling, decentralization, incentives for patients and care partners and after trial plan. Meaningful outcomes for patients include quality of life and composite functional outcomes that assess disease holistically and consider individual characteristics as well the impact on care partners. Advisors recommended to train patients on trial’s objectives and manage expectations. Care partners need to receive mental health support and education. Advisors highlighted the need for a more coordinated effort to emphasise the urgency for diagnosis and treatment of neurological conditions that will increase the interest of patients and care partners in research.
Conclusions:
Patients and care partners are key stakeholders in drug development and their support in designing meaningful clinical trials is needed to overcome challenges that slow down recruitment and retention.
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.