Despite progress in bolstering the diversity of clinical trials within the Alzheimer’s disease space, significant barriers to true study diversity and representation remain, as marginalised communities continue to contend with inaccessibility or outright exclusion from research.
This phenomenon is driven by several factors, said experts during a panel at the 2026 Alzheimer’s Association International Conference (AAIC), held in London from 12 to 15 July, who cite a lack of public trust, health equity issues, logistical challenges and government-led policies as barriers to participation for individuals in the black, Hispanic, indigenous, Asian and LGBTQ+ communities.
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According to Megan Zuelsdorff, assistant professor at the University of Wisconsin School of Nursing, inclusive representation is no longer a ‘should’ but a ‘must’ if Alzheimer’s research is to be ethical, useful and translatable on a large scale. When looking to achieve this, the onus falls on both academic institutions and the wider healthcare sector, Zuelsdorff noted, and to begin to break down barriers to research within the community, the focus must first lie in dismantling institution-level barriers to participation.
Jason Flatt, associate professor at UNLV’s School of Public Health, voiced similar opinions to Zuelsdorff – adding that co-developing trials alongside the community, rather than including their thoughts post-haste, could take diversity in clinical trials to the next level. Flatt applies this thought to recruiting patients from the LGBTQ+ community, who consistently face high barriers to Alzheimer’s research access despite LGBTQ+ adults being 29% more likely to report subjective cognitive decline (SCD) compared to cisgender and heterosexual individuals.
Similar issues around trial participation are seen in the Asian American, Native Hawaiian, and Pacific Islander (AANHPI) populations, added Van Ta Park, professor at UCSF’s department of community health systems. To overcome such challenges to boost recruitment within these marginalised groups, she believes educational materials must be tailored to specific cultural groups and registries should offer communities real incentives to get involved.
In the context of black and Hispanic patients, University of Houston assistant professor, Luis Medina, noted that building trusting relationships with the local community from the ground up, while focusing on accessible and engaging educational programmes, are two strong factors that could enhance participation within these marginalised groups.
As many in minority communities may also face logistical issues around reaching sites for treatment, all the panellists stressed the importance of moving a large portion of Alzheimer’s research into the community setting – allowing those who were unable to partake due to travel timings or costs to receive local treatment in a clinical trial.
With all these points in mind, speakers stressed the importance of flexibility, transparency and open discourse with the community when building diversity in clinical trials. This process, they say, will not always be simple, but it will help to create reliable data that may shape the next generation of Alzheimer’s care more indicative of the general global population.
It is not just Alzheimer’s research that is impacted by diversity barriers. According to research by Clinical Trials Arena, HIV/AIDS research in sub-Saharan African countries, where same sex relationships are illegal, have been heavily impacted, with fewer members of the LGBTQ+ community being willing to take part in research.
Contract research organisation (CRO) Parexel published a paper in May 2023, investigating the inclusion of the LGBTQ+ community in clinical trials in the US, also finding a disparity in transgender inclusion in clinical trials.
