World Dementia Council: Research and clinical trials dialogue, Latin America and Caribbean series

Abstract

Established in late 2013 following the G8 Dementia Summit, the World Dementia Council (WDC) brings together global leaders from dementia research, academia, industry, and non-governmental organizations. The Council's mission is to support the international community in advancing dementia research, developing effective treatments, increasing dementia awareness and early detection efforts, and improving knowledge of and action on the modifiable risk factors for dementia. Through international events, policy engagement, publications, and projects, the WDC plays a critical role in shaping the global response to dementia.

A key component of the WDC's work involves convening global dementia experts to participate in roundtable discussions to explore the latest updates on research, treatment, advocacy, prevention, and other emerging topics in the dementia space. Over the coming months, Alzheimer's & Dementia: The Journal of the Alzheimer's Association will feature updates from these events, showcasing the important dementia-related work that is going on across the world. This first update covers a recent WDC event that gathered experts from across Latin America and the Caribbean (LAC) to discuss research and clinical trials.

Dementia poses a significant public health threat across LAC; however, emerging research throughout the region presents opportunities for advancements in dementia treatment, detection, and support. To further explore the advances and updates in the research and clinical trial space, on November 21, 2024, the WDC held a virtual dialogue exploring different perspectives pertaining to dementia research and clinical trials as a part of its broader Latin American and Caribbean Series.

Series co-chair, Dr. Ricardo Allegri, Director of the Memory and Aging Center at the Neurological Research Institute in Buenos Aires, Argentina, presented on the current state of dementia in LAC, sharing that these regions will see a significant increase in dementia prevalence as well as exposure to the modifiable risk factors for dementia over the coming years. However, despite the growing prevalence of the disease and risk factors in LAC, there continues to be an unequal distribution of dementia-related costs and investments in the region compared to the rest of the world. Additionally, research on and access to new treatments like lecanamab and donanemab are extremely limited in LAC, further highlighting these inequities and the need to expand accessibility to treatments and broader research opportunities. Following this level-setting, the remainder of the roundtable focused on specific topics in dementia research and clinical trials and concluded with a group discussion.

The moderator for the roundtable, Dr. Claudia Durán-Aniotz, Assistant Professor at the Universidad Adolfo Ibáñez in Santiago, Chile, shared information about the opportunities and challenges related to blood-based biomarkers across LAC. She highlighted the region's challenges, such as limited research investment and infrastructure, and opportunities for leveraging biomarkers as diagnostic tools. Despite global advances in biomarker and dementia understanding, significant gaps remain regarding their application in LAC populations due to limited studies and underrepresentation in research.

Dr. Durán-Aniotz explained the different approaches to dementia diagnosis and the importance of adapting diagnosis protocols to take into consideration the barriers, like limited biomarker accessibility, that many LAC countries face. She also emphasized the need to also account for exposomal factors, such as socioeconomic inequities and air pollution, which can influence biology and potentially dementia risk.

In order to address these barriers, collaborations like the Latin American Consortium have been developed to discuss and share information about biomarkers, clinical trials, and methods. Through regional collaborations, information sharing, and advocating for resources and funding, these groups may help increase access and availability to biomarkers across LAC to support dementia diagnosis efforts and overall understanding of disease processes.

Dr. Sylvia E. Josephy-Hernández, a neurologist at the Costa Rican Social Security Office in San Jose, Costa Rica, explained her experience navigating the research environment in Costa Rica after receiving training in Canada and the United States. She discussed the differences she encountered between the standard research trajectory and established-research infrastructure that exist in Canada and the United States compared to Costa Rica. Upon returning to Costa Rica, rather than immediately pursuing her planned research projects, Dr. Josephy-Hernández had to focus on building basic infrastructure, such as establishing the systems, teams, and resources necessary to conduct research. However, it is important to note that LAC is an incredibly diverse region with varying levels of established research infrastructure, for example, countries like Argentina, Chile, and Mexico have more advanced research systems, serving as models for other nationals in the region.

Dr. Josephy-Hernández highlighted the critical role of collaboratives throughout LAC, like the ReD-Lat Consortium, which is instrumental in encouraging information sharing, providing motivation and inspiration, and building networks. However, these initiatives do not fully eliminate the research challenges faced by many LAC countries, including limited funding, government support, and the need for stronger research infrastructure. Collaborative efforts, researchers, and institutions need to prioritize developing and retaining research talent within LAC so that they may work to make research and infrastructure improvements within their communities. Supporting these researchers in building local capacity is important for ensuring sustainable progress in the research space.

Dr. Gustavo Sevlever, Director of Education and Research at the Fleni Institute in Buenos Aires, Argentina, discussed the barriers and opportunities to advancing clinical trials in LAC. Dr. Sevlever shared that, despite being underrepresented in global clinical trials and scientific publications, primarily due to limited clinical and operational infrastructure, LAC holds significant potential for growth due to a number of regional strengths.

One key strength is the widespread patient availability across the region, which is a critical element of successful clinical trials. Research groups have called for expanding the representation of low- and middle-income countries in global dementia research. Industry assessments have also identified several LAC countries as major growth opportunities in the clinical trial space, emphasizing the importance of investment in clinical and operational capacity for these countries.

Dr. Sevlever also detailed the impact of regional LAC efforts including LatAm FINGERS, the first non-pharmacological multicenter randomized clinical trial to prevent cognitive impairment in Latin America. LatAm FINGERS is not only testing the efficacy of a multidomain lifestyle intervention in reducing dementia risk, it has also facilitated the creation of a Latin American biobank of sociodemographic, behavioral, cognitive, MRI, blood and plasma, and DNA data. These efforts showcase the potential for collective efforts and collaborations to improve clinical trial capacity, data collection, and infrastructure in LAC. Through these initiatives and by leveraging emerging resources like artificial intelligence and exploring diverse and untapped funding sources, there is potential to increase dementia-related clinical trials throughout LAC.

The roundtable concluded with a discussion led by moderator, Dr. Claudia Durán-Aniotz. Participants lauded the progress being made by various consortiums in LAC and their role in generating large amounts of data to be used in research and clinical trials. Another key theme from the roundtable was the importance of elevating aging and dementia as major public health issues and research priorities. Recognizing aging and dementia as public health priorities can place greater pressure on funding organizations and pharmaceutical companies to invest in aging-related research and trials. Leveraging these consortiums and collaborations is incredibly important to urge the public, health systems, policymakers, and industry to address the needs of an aging society, improve infrastructure, and fund studies across diverse populations.

During the roundtable presentations, the issue of limited clinical and operational infrastructure was frequently discussed; however, one participant mentioned that infrastructure is not the fundamental challenge. Infrastructure is something that can be solved, especially through cooperation between academia and industry. The crucial barrier hindering the region from increased clinical trials, especially those conducted by pharmaceutical companies, is bureaucracy. Across certain LAC countries, the regulatory and bureaucratic processes required to approve a study can take up to 2 years. Although researchers may have limited ability to resolve bureaucratic issues, this is an important topic for consortiums, non-government organizations (NGOs), advocacy groups, and others to address with government agencies.

Roundtable participants concluded by stressing the importance of collaboration, a recurring theme throughout the presentations. The more collaborations and networking that occur across the region, the more effectively researchers can build stronger and more efficient research infrastructure to continue making more advances in the dementia field.

This roundtable was the first of three dialogues focused on dementia in Latin America and the Caribbean and are precursors to the 2025 WDC Satellite Summit in Lima, Peru, which will challenge participants to think boldly about making advances in dementia care, treatment, and prevention. Summaries from these events, as well as summaries from the upcoming WDC Treatment Series and WDC Summit in London will be published over the coming months.

To learn more about the WDC, please visit worlddementiacouncil.org or email Lenny Shallcross, Executive Director, at [email protected].