The National Institute on Aging (NIA), part of the National Institutes of Health (NIH), has launched a new online research tool to help increase participation by traditionally underrepresented populations in clinical trials on Alzheimer’s disease and related dementias. Unveiled at the Alzheimer’s Association International Conference (AAIC), the new device enables those involved with leading clinical research to create and customise participant recruitment communications such as websites, handouts, videos, and social media posts.
NIA Director said that there is a critical need for people living with Alzheimer’s and related dementia, as well as those at higher risk, and healthy people, to participate in clinical trials. The need is especially acute for frequently underrepresented groups such as Black and Hispanic Americans, which is why the online tool includes an emphasis on helping clinical trial researchers connect with these and other important communities.
The development of the online tool is an integral part of NIA’s efforts to implement the National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research. Released in 2018, the national strategy was developed in collaboration with the Alzheimer’s Association with input from government, private sector, academic, and industry stakeholders, as well as from individuals, caregivers, and study participants. The overarching goal is to engage broader segments of the public, including underrepresented populations, to participate in Alzheimer’s and related dementias clinical research.
Clinical trials must have appropriate representation to ensure the researchers have a complete understanding of how well different therapies or approaches to dementia care work in different populations. The tool was designed to provide well-tested and culturally appropriate outreach materials that resonate with diverse populations and encourage them to participate in clinical trials.
To use the tool, researchers and clinicians first select desired templates with one of three communication goals in mind: 1) to educate about Alzheimer’s, related dementias, and/or brain health; 2) to increase awareness and interest in Alzheimer’s and related dementias clinical trials; or, 3) to provide information about a specific Alzheimer’s or related dementia clinical trial to currently enrolling participants. Each template can then be tailored using a central library of messages, headlines, photos, and text that have been extensively tested among individuals representing diverse and underserved populations.
The tool’s current library of content includes materials specifically designed for a range of audiences including. Initially, the materials will be available in English and Spanish, and there are plans underway to add Asian American and Pacific Islander resources and languages by Fall 2021. Materials for American Indian and Alaska Native communities will be developed and added in 2022.
NIA developed the online tool and its content systematically by using literature reviews, environmental scans, listening sessions with stakeholders, focus groups, national surveys, and user testing. The NIA team created tool features in a culturally responsive way so that all stages of content development reflect the culture and languages of the communities for whom the materials are designed. NIA plans to add content and scale up the tool’s capabilities based on feedback and performance measurement.
NIH aims to use digital technology to improve healthcare, therefore NIH will award up to US$ 400,000 to individuals or groups who design an effective method for analysing a large data set of first-time pregnancies.
As reported by OpenGov Asia, innovative methods also need to identify risk factors for adverse outcomes, such as hypertensive disorders, diabetes and infection. A total of $50,000 will be awarded to each of the seven winners designing the most effective means to analyse the data. An additional $10,000 will be awarded to the top five winners whose methods identify risk factors in disadvantaged populations.
