By Kate Radcliffe
Research Coordinator, Division of Geriatric Medicine & Palliative Care Department of Medicine, NYU Langone Health, and the NYU ELM Team
A clinical trial is a research study where investigators try new strategies or medications on groups of people to see if they are effective. Some participants receive the new strategy or medication while others receive an inactive or
“placebo” pill or neutral approach to test the difference in response.
To learn more about clinical trials or to participate in one, please click here.
Scientific evidence drives guidelines on diagnosis, management, and treatment of medical conditions, including Alzheimer’s disease and related dementias. Scientific advancement in the diagnosis and treatment of Alzheimer’s disease has never been more urgen t. Despite its importance, clinical trial participation has been steadily declining over the last 30 years, including for those who are 60 years and older. This is especially problematic for those from underrepresented groups, which include nonwhite and various ethnic groups. This absence of diversity makes it difficult to get results that are meaningful to a wide range of older people. Researchers at NYU Langone Health recognize that diversity is of critical importance to the study of Alzheimer’s disease and other age-related conditions. With funding from the National Institutes of Aging over the next three years, an NYU research collaborative will work to improve the representation of diverse communities in aging research.
Announcing the ELM Research Collaborative
The ELM (Engagement in Longevity and Medicine) Research Collaborative is an innovative strategy to improve the participation of older adults in clinical research. ELM is a collaboration among health services and community researchers across New York City who are committed to improving the health of underrepresented older adults. Housed at NYU Langone Health, ELM includes organizations such as CaringKind, the Department for the Aging (DFTA), in addition to partners from AARP, Hamilton Madison House, and Korean Community Services. ELM’s broad reach benefits from long-standing partnerships with organizations who have experience working with diverse communities across New York City.
Over the next three years, the ELM team will be examining best methods to improve representation from diverse communities in research focused on Alzheimer’s disease and related dementias as well as in research of other aging-related conditions. Below are some of the exciting approaches that the ELM Research Collaborative will be developing.
Developing and Testing Innovative Approaches
The ELM Research Collaborative will test and evaluate approaches to improve the participation of diverse older adults in research using new technologies within the NYU Langone Electronic Health Record as well as through working with on-the-ground “community navigators” — people who represent the community and help others find resources and answer questions. ELM will study specific methods and messages to identify those that are most effective in recruiting older adults in research. This work will involve studies that are already actively recruiting.
Strengthening the Capacity of Research Teams to Recruit Older Adults
Conducting research with older adult populations requires understanding of the unique and real-life challenges of older people. For example, an older participant’s difficulty getting around may require the study team to help with transportation. Investigators often use study participation criteria that do not allow subjects who have trouble with memory or thinking. This can limit the generalizability of research findings. Hearing loss or other sensory impairments may make it difficult for the subject to communicate with the study team, also limiting opportunities for participation. Research that involves older populations requires targeted strategies to recruit and retain participants. Drawing upon years of experience in aging research and the expertise of organizations like CaringKind, ELM will be developing and implementing a training program to improve the ability of existing and future research teams in getting older adults to participate and continue to participate in research. This novel training program will be a resource for research programs throughout the United States.
Create an “Aging Registry”
In collaboration with ELM’s academic and community organization partners, the Collaborative will create an electronic “registry” of willing current and former research subjects as well as individuals who have never been a research participant but have some level of interest. From this registry, researchers will be able to identify potential research participants and offer participation. This registry will serve as an ever-growing resource to assist researchers focused on aging-related conditions such as Alzheimer’s disease and it will link to other national registries, furthering the reach of ELM’s efforts.
Although the ELM Research Collaborative is still early in development, the ELM team is hard at work and plans to have some resources ready before the end of the year. We will be updating you as the program progresses and as more resources become available. If you are interested in learning more please contact the Research Manager, Jessica Smilowitz at Jessica.firstname.lastname@example.org