Hello everyone!
We recently published an article in Nature Reviews Neurology discussing the lack of diversity in PD research and proposing practical measures to help move the field forward.
The main idea is simple: if most PD research comes from only a small part of the world, our understanding of the disease will also be incomplete. Many excellent articles have discussed diversity gaps in specific areas, such as genetics, environmental exposures, or clinical trials. In our article, we tried to bring these pieces together and show how lack of diversity affects the whole PD research ecosystem, from epidemiology and basic science to biomarkers, data analysis, and trials.
Also, when we propose suggestions, we tried to always highlight successful initiatives to follow, so that the reader can have a more concrete example of how problems can be solved.
1. The problems
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The burden of PD is shifting, but research is not.
Many people living with PD are in low and middle income countries, but most studies still come from high income settings. This limits how well our findings apply globally. -
Epidemiology is still incomplete.
In many regions, we do not have reliable estimates of PD prevalence and incidence. Without good data, it is harder to plan care, prevention, and research priorities. -
Environmental risk studies are geographically narrow.
Exposures such as pesticides, metals, solvents, air pollution, and lifestyle factors may vary a lot between regions. However, most evidence still comes from places that may not reflect these local realities. -
Genetic studies remain heavily biased.
Although several recent advancements have been made, PD genetics has been dominated by European ancestry populations. This limits gene discovery, risk prediction, and our understanding of how genetic findings translate across ancestries. -
Biomarker and clinical cohort studies are not diverse enough.
Many deep phenotyping cohorts and biomarker studies include mostly white participants from high income countries. This can make diagnostic and prognostic tools less reliable for other populations. -
Clinical trials and basic science also have diversity gaps.
Trial populations often do not represent the people who will eventually use the treatment. Even preclinical research often underuses sex, genetic background, age, and environmental diversity.
2. The solutions
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Invest in local research capacity.
Funding should support infrastructure, training, career development, and leadership in under represented regions. We provide several examples of initiatives that have helped advance this field, such as GP2, the Edmond J. Safra Fellowship in Movement Disorders, and the International Parkinson and Movement Disorder Society Visiting Trainee Grant Program (and I was a member of this program last year, when I was doing a research fellowship in the US!). We also emphasize that, at a local and/or national level, keeping a constant flow of investment in PD care and research can be supported by awareness and advocacy, and we cite the US National Plan to End PD Act as a good example of how advocacy can move the field forward. -
Use harmonized but locally adapted methods.
We discuss examples such as adapting and validating clinical scales, smell tests, REM sleep behaviour disorder tools, and other accessible biomarkers in local populations, while also using harmonized platforms such as AMP PD to make data more comparable across cohorts. -
Build real community engagement.
Improving diversity is not only about recruiting more participants. We highlight examples such as BLAAC PD, which used community advisory boards and culturally responsive recruitment materials. -
Create equitable collaborative networks.
International collaborations can accelerate discovery, but they need to avoid extractive models of science. We discuss examples from PD genetics, including IPDGC, IPDGC-Africa, EAPDGC, LARGE-PD, LUX-Giant, BLAAC PD, CAT-PD, and AAPDGC, many of which work with GP2 and show how regional networks can support more inclusive discovery. -
Improve editorial and regulatory policies.
We discuss examples such as publication fees, language barriers, lack of scientific writing mentorship, limited diversity in editorial boards, and rigid data sharing requirements that may unintentionally penalize researchers working in settings without secure repositories or flexible national regulations. -
Connect research equity with care equity.
Finally, we argue that research diversity cannot be separated from access to care. Stronger epidemiology, culturally competent engagement, local trial infrastructure, and minimum standards of diagnosis and treatment should advance together, so that scientific discoveries do not remain limited to the populations and health systems already best represented in research.
Overall, our message is that diversity in PD research is not only an ethical goal, but a concrete outcome that will improve the field as a whole!
Unfortunately, the manuscript is not publicly available due to Nature Reviews policy. However, I would be happy to share it directly with anyone interested in reading the full article!
Loving the visuals, and it’s a great paper! This has absolutely nothing to do with you of course Daniel and this is not a comment on your fabulous work itself, but I just have to note how these journals with insane fees featuring papers continuously screaming for reduced/waived publication fees to make papers more accessible is wild to me. You’d think a journal publishing a wonderful paper like this clearly mentioning fee reductions as an important step for diversity would actually follow suit, but nope…