Webinar recap: Why patient centricity is no longer optional in ALS clinical trials

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Patient centricity has become increasingly important in clinical trials for ALS. In this webinar, host Paul Wicks and Cathy Collet discuss the challenges of patient engagement in ALS clinical trials and the potential ways to overcome them.

The link to the full webinar is here; a brief summary is below for easy reference.

About the speakers

Paul Wicks-2

Paul Wicks

Paul Wicks is a consultant to clinical research and digital therapeutics companies, including Sano Genetics, Ada Health, and Woebot Health. Paul spent 10+ years at PatientsLikeMe, starting in R&D and finishing his time at PLM as VP of Innovation.

Cathy Collet

Cathy Collet

Cathy Collet is a world-leading ALS advocate who is passionate about improving patient engagement in clinical trials. She has worked with Sano Genetics, among other organisations, and her advocacy work includes lobbying for ALS drug development and speaking on the importance of patient centricity in clinical trials.


Highlights from the webinar

What are the keys to ensuring patient interest in clinical trial participation?

Paul and Cathy discussed the fact that the traditional approach to clinical trials has been focused solely on scientific outcomes and statistical design. However, this approach is no longer sufficient and it is instead essential to focus on what is important to patients and the community. Engaging with individuals living with or affected by the condition such as ALS is necessary to ensure that trials are successful.

The drug development process is costly and long, but it is important to ensure that patients are treated with respect and dignity throughout, especially during clinical trials. They should be involved in the trial process from the very beginning, consulting on which drugs to develop, what outcomes to measure, and how to design a protocol that limits patient burden. Patient engagement is not only a moral and ethical imperative but also makes good business sense, as designing trials better can lead to fewer failed enrolments and protocol changes.

What steps are regulatory agencies taking to ensure patients are kept at the center of clinical research?

This webinar noted that the Food and Drug Administration (FDA) recognises the issue of burdensome trials and encourages stakeholders to engage with patients and other experts. Patient preference researchers are considered to be equally important as statisticians, and trials are not commissioned without statistical input. In England, the Medicines and Healthcare products Regulatory Agency (MHRA) is considering making it a legal requirement in legislation to have patient involvement and patient engagement.


Patient centricity is no longer optional. It is critical to involve patients in the process to ensure that the trials are successful, especially in the ALS space. The trial process must be designed with the patient in mind, including their unique perspective on what is most burdensome. By doing so, we can move towards co-design and co-production, which will lead to better outcomes for everyone involved.

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