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Tracking the landscape of dementia research and resources

Charlene Liggins
Charlene LIGGINS,
Senior Scientific Program Analyst,
Division of Neuroscience (DN)
.

The dementia research landscape is wide, varied, and growing. While NIH funds a huge amount of dementia research, we’re not the only funding organization supporting research to understand the underlying mechanisms of age-related dementias, or to identify biomarkers, or to develop and test therapies, or increase knowledge around patient care.

Whether you’re a researcher, caregiver, or just interested in learning more about Alzheimer’s research, the International Alzheimer’s Disease and Related Dementias Research Portfolio (IADRP) is a resource you should know about. A joint initiative between NIA, the National Institute of Neurological Diseases and Stroke, and the Alzheimer’s Association, IADRP compiles funded research projects and resources from more than 40 public and private organizations in over 10 countries representing over 4,000 researchers at more than 1,000 awardee organizations. With information accessible through a searchable database, IADRP tracks current and emerging areas of dementia research to report how funding is allocated, to help identify potential scientific gaps, and to inform the paths that allow different organizations to collaborate. This short video describes IADRP in detail:

What can you find in IADRP?

Dating back 10 years, IADRP has codified more than 9,000 unique projects and multiple resources using a common framework: the Common Alzheimer’s Disease and Related Dementias Ontology (CADRO). CADRO includes eight coding categories:

  1. Molecular Pathogenesis and Physiology of Alzheimer’s Disease and Alzheimer’s Disease-related Dementias
  2. Diagnosis, Assessment and Disease Monitoring
  3. Translational Research and Clinical Interventions
  4. Population Studies
  5. Dementia Care and Impact of Disease
  6. Research Resource
  7. Consortia and Public-Private Partnerships
  8. Brain Aging and Common Mechanisms related to Dementia

CADRO’s categories cascade to narrower topics, and most topics further cascade to even more specific themes. CADRO’s three-tiered framework offers more than 300 different codes capturing targeted research related to Alzheimer’s disease, frontotemporal dementia, Lewy body dementia, and vascular dementia or dysfunction.

What can you do with the IADRP database?

The IADRP database enables you to:

  • Filter and export projects by different types of dementia and all three tiers of CADRO and project information, including funding organization, principal investigator, and awardee organization
  • Visualize and export search results using maps, charts, graphs, and summary data tables
  • Link to research project outputs and resources such as clinical trials, patents, repositories and other databases

Who can use IADRP data?

In truth, any interested party can use IADRP data. Funding organizations can use the data to inform strategic planning, evaluate and assess trends in the allocation of their funding across specific research areas, and inform decisions about potential co-funding opportunities with other organizations with shared priorities. Researchers can use IADRP data to identify potential collaborators with similar scientific interests, assess potential research gaps, and link to resources to support current and future efforts. Advocacy organizations can chart the growth of how funding is and how agencies and organizations have been distributing it among the different categories over the last 10 years.

IADRP continues to grow and evolve. We welcome new partner organizations that are funding research and developing resources to support dementia research. For more information about IADRP or about how to become an IADRP partner, please email me.

Comments

Submitted by Diana on November 28, 2018

What are the resources available to children and siblings of patients with early onset Alzheimers so that they can enroll in a trial or get evaluated for disease.
Any trials they can participate in? Is there any counseling available for these family members so that they can plan their lives realizing that they are at an increased risk for the same? What about the ones where the genetic test is negative?

Submitted by David Wiltsee on November 28, 2018

Please set up a working relationship with the federal Administration for Community Living (ACL), the National Association of Area Agencies on Aging (N4A), and AARP. This, in turn, can be the way to keep the hundreds of Area Agencies on Aging (AAAs)nationwide up to snuff on the many facets of Alzheimers/Dementia -- and to better equip the AAAs to set up the necessary mechanisms to serve their senior constituents and people with disabilities. Effective community-based programs and services are currently few and far between.

Submitted by Milton Williams on November 28, 2018

Interested in 2 areas.
1. I'm 67 and a healthy practicing artist and would like to participate in any current or future studies regarding Alzheimer's.

2. Do you have any research that has shown by developing knew painting/creative art techniques or experimenting out side ones usually painting practices can help slow or prevent dementia?

Thank You. Milton Williams

Submitted by marty stone on November 28, 2018

My grandparents on both sides had dementia and was curious of the research.