Transforming Alzheimer’s research with real-world data

Transforming Alzheimer’s research with real-world data

Picture of Jessica Boten

Jessica BOTEN,
Lead Social Science Analyst,
Division of Behavioral and Social Research (DBSR)

Rebecca Krupenevich

Rebecca Krupenevich,
AAAS Science & Technologies Coverage Fellow ,
Division of Behavioral and Social Research (DBSR)

Editor’s Be aware: The writer is grateful for significant contributions to this publish from the NIA Real-Environment Details Preparing Committee: Partha Bhattacharyya, Stacy Carrington-Lawrence, Rosaly Correa-de-Araujo, Patricia Jones, Lisa Onken, Nadezda Radoja, Marcel Salive, and Nina Silverberg.

Leveraging the energy of serious-world info has excellent prospective to advance Alzheimer’s ailment and similar dementias investigate in larger sized, additional inclusive, and numerous populations. Right now, there is an unprecedented wealth of facts available on how individuals engage with the health treatment method, their health behaviors, and how the environments in which they are living and function have an impact on their wellbeing. These true-world information resources involve digital wellness records, diagnostic exam benefits, clinical images, insurance policy promises, affected person-produced information collected in the home, cell units and wearables, and numerous others.

Combining and examining serious-world data in techniques that just can’t happen in a investigation study or scientific trial can aid us uncover new insights and designs that would usually keep on being hidden. Enhanced accessibility to and use of serious-globe data can also lessen study costs, decrease participant stress, and help scientists quickly consider remedies and interventions across big and a lot more representative groups of persons residing with dementia and their care partners.

With these plans in intellect, we are happy to announce a Ask for for Purposes to Develop the True-Environment Knowledge System (RWDP), a new initiative led by NIA in collaboration with the NIH Nationwide Institute of Neurological Ailments and Stroke. If this sparks your fascination, be absolutely sure to register for the informational webinar coming up April 19 at 4 p.m. ET, to learn additional.

Leveraging true-earth data in growing old exploration

The RWDP will backlink several facts resources and investigation scientific studies to much more precisely symbolize 70% to 90% of the U.S. population, such as up to 80% of persons dwelling with dementia. The most up-to-date in ongoing NIA efforts to discover and website link existing datasets, this new initiative and its structure ended up educated by a associated workshop (PDF, 454K) held in spring 2022 and a Ask for for Details issued past fall.

The RWDP will help a wide selection of scientists access and evaluate health and fitness facts in a protected cloud computing environment, and recruit from a extra assorted pool of persons. It will also assistance collaboration between wellbeing care and neighborhood wellbeing providers to build and aid innovative techniques for scalable electronic, decentralized, pragmatic, and scientific trials. Yet another best goal is to prioritize engagement with communities that have been traditionally marginalized and underrepresented in scientific research and be purposeful in addressing disparities when incorporating safe data resources and finding out wellbeing outcomes.

Eventually, as element of the initiative, the awardees will keep nationwide competitions to fund and facilitate revolutionary investigation jobs that address gaps and priorities in Alzheimer’s and related dementias exploration, this sort of as creating patient registries and expanding clinical analysis networks.

Discover more on April 19 and use by July 31!

If you are intrigued in developing the Authentic-Environment Info System, apply to the recognize of funding possibility by July 31. Be confident to register for the pre-software specialized assistance webinar to be held April 19 at 4 p.m. ET., and if you have inquiries, electronic mail [email protected].