In this article the authors analyzed 37,131 participants enrolled in neuromuscular clinical trials over the past 20 years. Most participants were male (61.4%), White (83.5%), and non-Hispanic/Latino (87.6%).

Although the proportion of studies reporting race and ethnicity increased over time, the demographic composition of participants remained largely unchanged.

Significant disparities persist in the representation of race, ethnicity, and age in neuromuscular disease clinical research, underscoring the need for more inclusive study designs.

Doi: doi.org/10.1007/s00415-025-13208-8

Posted by Ok_Income4459

15 comments

  1. I mean it’s data for sure. But is it beautiful? 😅

  2. When I started in Big Pharma, early 80s, all the clinical trials my company conducted were populated by white men, no women.

  3. So the claim is that these studies were designed to be exclusive to middle white aged men and somehow the data produced would be better if other demographics were overrepresented instead?

  4. In white majority countries the majority of participants in clinical trials will indeed be white. Next some researcher is going to be confused that participants in clinical trials in China are mostly asian.

  6. What exactly is this supposed to demonstrate? That the demographics of clinical trials correlate with the overall demographics of the countries where most clinical research takes place? Because that seems rather obvious.

  7. > The vast majority of patients in neuromuscular clinical trials are white, not hispanic or latino, middle-aged men.

    And can you think of any other alternative explanations for why that demographic imbalance might exist than these studies are simply not inclusive? Like, say, a general (and entirely reasonable) mistrust of experimental medicine among black folks? Or motherhood?

    Your conclusion that these studies need to be more inclusive based on nothing more than this correlation seems pretty flimsy. What other evidence do you have that they are not inclusive?

  8. This part gets me lol

    >Studies on X-linked recessive disorders (i.e., Duchenne muscular dystrophy (DMD), Becker muscular dystrophy, and spinal and bulbar muscular atrophy (SMA)) predominantly excluded female participants.

    X linked recessive disorders are studied in men. Hmm, I wonder why lol

  9. We have the thalidomide crisis and uninformed overreactive policy to thank for this in the USA.

  10. This stat is highly incredible with how many unknown/not reported there is.

  12. “More inclusive study designs”??

    First of all, studies are all volunteers — it’s not like a trial sponsor can go out and force anybody to undergo a clinical study. Second, it’s possible to get a good idea of racial and sexual differences in how the study drug works even if the entire study population isn’t representative. You just need “large enough” subsets.

  14. If race is a social construct according to you people, then why would this matter? Who cares?

  15. Not saying it makes it OK, but the main reason for under-representation of women, has been the need to avoid the risk of testing drugs on women that could be unknowingly pregnant. So it has been easiest for a lot of studies to just not have women at all. Of course, this means that women aren’t served well by research.

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