Gaps Remain in Biomedical Research in Frontotemporal Dementia

More patients from underrepresented groups should be enrolled in frontotemporal dementia clinical trials and infrastructure for biomedical research in underrepresented populations should be improved, according to research published in Alzheimer’s & Dementia.

Experts from the Diversity and Disparities and the Frontotemporal Dementia Professional Interest Areas of the International Society to Advance Alzheimer’s Disease and Treatment (ISTAART) conducted a systematic review and outlined critical gaps in knowledge of how underlying disease markers are shared or different in of frontotemporal dementia ethnoracial diverse groups.

More than 30 population-based studies have described the frequency of frontotemporal dementia over the past 30 years, more than half of which were conducted in Europe or North America. Very few studies considering the prevalence of frontotemporal dementia were conducted in Africa and the Middle East. Limited data is available on frontotemporal dementia in First Nations people, Indigenous Australians, Aboriginal people, and Pacific Islanders.

Over time, it has become more accepted that structural and social determinants of health are risk factors for neurodegenerative disease; however, this remains understudied in frontotemporal dementia research. Studies have demonstrated associations between educational attainment and brain function, cognition and gray matter volumes, as well as occupational characteristics and atrophy patterns, brain metabolism, and survival. This data, however, is not available for populations of non-European descent.

The effects of vascular factors and head trauma on frontotemporal dementia frequency, morbidity, and mortality in patients of non-European descent are not well understood.

Genetic analyses of frontotemporal dementia that were conducted in North America and Western Europe rarely included other population groups. Research on frontotemporal dementia in diverse populations is growing. Existing research primarily focuses on C9orf72, MAPT, and GRN.

Biomarkers have demonstrated diagnostic and prognostic potential in frontotemporal dementia; however, several challenges remain, including accurate definitions of significant covariates that are necessary to interpret biomarkers, ethnic and genetic diversity, patient burden, resource and processing time, and affordability.

Developing more sensitive “omics” technologies may help improve diagnostic capability. To address the confounding effects of ethnocultural background in the disease process, greater collaboration among frontotemporal dementia cohort studies is required. Lifestyle and cardiovascular risk factors for dementia in non-White groups are also important to consider.

The majority of clinical trials for people with frontotemporal dementia have been conducted in North America, Western Europe, and Australia. Neuromodulatory interventions and gene therapy approaches are only offered at highly specialized centers due to high cost and the high-level technical resources and skills that are necessary for their implementation.

Participants in frontotemporal dementia research must represent the racial, ethnic, socioeconomic, and sex distribution of all living persons with the disease.

“[M]uch work remains to reduce the gaps in our knowledge of the mechanisms and pathways by which ancestral and ethnocultural background influences the risk factors, clinical expression, distribution, recognition, diagnosis, and treatment of FTD [frontotemporal dementia] syndromes,” the study authors concluded.

Disclosure: One study author declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of authors’ disclosures.