In order to facilitate communication and collaboration, build synergy, and leverage resources, it is imperative that research across nations and across funders be coordinated. The actions below will formalize the coordination process beyond HHS and the Federal Government and make research available to the public for input.
(UPDATED) Action 1.D.1: Inventory Alzheimer's disease and related dementias research investments
IADRP -- a free, searchable database providing a global overview of AD/ADRD research and funding -- is an invaluable tool for assessing and planning AD/ADRD research projects. Funding organizations, researchers, and advocates are discovering IADRP's merits to help them coordinate strategies, leverage resources, avoid duplication, and identify promising areas of growth. Since NIH launched the database in 2012, in collaboration with the Alzheimer's Association, IADRP has amassed data on over 9,000 unique projects from 2008 through 2018, reflecting more than $7 billion in research funding worldwide. The number of contributors is growing, too. During the past 5 years, more than 40 funding organizations across greater than ten countries have joined the IADRP effort.
In 2018 the IADRP database was relaunched with several changes to the Common Alzheimer's Disease Research Ontology (CADRO), including greater specificity in the coding of FTD, LBD, and VCID. Additionally, users can now link research to related clinical trials, patents and data repositories, as well as visualize search results with dynamic charts and graphs.
For more information, see:
(UPDATED) Action 1.D.2: Expand international outreach to enhance collaboration
In collaboration with the European Union (EU) Joint Programme -- Neurodegenerative Research (JPND), NIH is participating in the upcoming EU mapping exercise that invites 20+ countries to submit their recently funded neurodegenerative research. This exercise will serve as a platform for increased collaboration among international dementia researchers and funding organizations.
In 2017, JPND launched a call on "Multinational research projects for Pathway Analysis across Neurodegenerative Diseases". At the same time, NIA released FOA PAS-17-028, "Common Mechanisms and Interactions Among Neurodegenerative Diseases (R01)". JPND and NIA plan to support cross-cutting activities such as common workshops and data exchange and harmonization among the projects funded by JPND and NIA in response to these calls for applications.
Additionally, NIA participated in the Alzheimer's Disease Funders' meeting held during the 2017 Alzheimer's Association International Conference (AAIC) as well as quarterly international funders' calls led by the Alzheimer's Association. Also, IADRP, maintained by NIA, includes data from over 40 public and private funding organizations across more than ten countries and is publicly-available for use.
For more information, see:
(NEW) Action 1.D.3: Identify research priorities via surveys tracking health conditions and risk factors
The Behavioral Risk Factor Surveillance System (BRFSS) is the world's largest, ongoing telephone health survey system, tracking health conditions and risk behaviors in the United States yearly since 1984. It is conducted by all states under the direction of the CDC with state public health authorities. Two special optional modules that states can include in their annual surveys are available on the topics of caregiving and cognitive impairment. Collecting and analyzing this data allows the study of burden, impact, and trends and is used by decision makers to decide course of action for research as well as interventions.