By Paulo Fontoura, Global Head of Neuroscience and Rare Diseases Clinical Development at Roche
In the past decade, we – the global neuroscience community – have come so far in our understanding of complex conditions that have eluded scientists for so long, including some of the most common disorders like multiple sclerosis (MS), Alzheimer’s disease (AD), and lesser-known rare diseases like spinal muscular atrophy (SMA) and neuromyelitis optica spectrum disorder (NMOSD). We have changed the way we think about, diagnose, and in some cases, treat or even cure these diseases. But there is a current challenge in neuroscience research, which we cannot ignore: most clinical research today does not accurately reflect the diverse people living with the conditions being investigated. Unless we tackle this challenge, we will undermine our hard-won progress and limit our ability to bring the breakthroughs to people with neurological disorders who are so in need. The way people are affected by a disease, their symptoms and their response to treatment, can vary across populations, so how can we truly understand a disease, and how best to treat it unless those populations are represented in our research? We can’t, is the answer.
During National Minority Health Month in April 2021, I was honoured to join a panel of neuroscience community leaders to discuss these inequities in neuroscience, and particularly the factors that are impacting participation in clinical trials. Together, Jason Resendez (Executive Director of the UsAgainstAlzheimer’s Center for Brain Health Equity), Dr Mitzi Williams (Neurologist and MS specialist), Dr Nimish Mohile (Professor of Neurology, Diversity Officer at the University of Rochester and Co-Chair of the American Academy of Neurology Diversity Officer’s Work Group) and I explored the steps we can take to address these challenges.
Here are just three of the many points I took away from our enlightening discussion:
When we carry out clinical research, we have a responsibility to do everything in our power to ensure that the insights we generate can help neurologists and physicians to provide care for their communities, wherever those communities are. This means designing clinical trials and trial protocols to be inclusive. Jason Resendez described the need to set goals for the inclusion of underrepresented communities right at the start of the development process, and then to design the trial to make it as successful as possible in reaching those goals. It is an approach I believe we should all embrace. For an example of inclusive design, I encourage you to look at Dr Williams’s work on the Roche CHIMES study in MS of Black and Hispanic Americans. It’s the first study of its kind and one we are very proud of.
Jason also highlighted the powerful structural inequalities that can keep people from minority communities from participating in neuroscience research. We must be proactive in identifying and overcoming these barriers. Among other things, this means thinking about where our trial centres are located, how people are made aware of research opportunities, and how our recruitment can be inclusive. The work Dr Mohile and his colleagues at the American Academy of Neurology are doing to develop an anti-racist curriculum for the organisation, and to support diversity champions in neurology departments across America, is a powerful example of the type of action needed to drive structural change. It is work we are grateful to be able to support.
Dr Williams told us how, four or five years ago, she gave a well-received lecture about poorer outcomes for African American people living with MS. After the lecture, she was struck by the thought that she had been giving essentially the same talk for ten years and yet nothing had changed during that time. To me, this is a very powerful call to action. We simply cannot let another ten years pass without changing the status quo. To do so, we would miss the opportunity to improve the lives of millions of people around the world. To do so we would jeopardise the progress the community has worked so hard to achieve to make impactful progress in the field of neurology.
Having the opportunity to spend an hour talking about health equity in neuroscience with Dr Williams, Dr Mohile and Jason was a privilege. It left me feeling inspired by the vision and determination of the neuroscience community to make change happen, and more determined than ever to play my part. I would urge anyone with an interest in neuroscience, the future of clinical research, or in health equity more broadly to
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