Advancing research towards the development of paradigms for detection of cognitive impairment and dementia that will benefit the public.
OUR MISSION
The Consortium for Detecting Cognitive Impairment, Including Dementia, is a collaborative network of research programs that also performs cross-site validation of paradigms including tools and protocols, with an overall goal of increasing the frequency and improving the quality of patient evaluations for detecting cognitive impairment in primary care and other everyday clinical settings, as well as community screenings. Up to half of the funded consortium research focuses on paradigms specifically designed to address barriers to detecting cognitive impairment associated with health disparities. The Consortium consists of research teams at UCSF, Albert Einstein College of Medicine, and Northwestern University, with UCSF acting as the Cross-Consortium Coordinating Team (CCCT). Each team is funded by grants from the National Institute of Neurological Disoders and Stroke (NINDS).
BACKGROUND
Early detection of incident cognitive impairment, including dementia, is viewed as a healthcare priority in the United States, and was identified as an important research area in the Alzheimer's Disease-Related Dementias (ADRD) Milestones developed in response to the National Plan to Address Alzheimer's Disease at the ADRD Summit 2016. For example, detecting cognitive impairment is a required component of the Medicare Annual Wellness Visit. Assessment tools, as well as signs and symptoms of cognitive impairment and dementia, are made available by the NIA, the Department of Veterans Affairs, the Alzheimer's Association and others. However, despite the existence of cognitive assessment tools that are widely accessible, cognitive impairment, even when dementia is present, is frequently under-recognized and underdiagnosed in primary care and other everyday clinical settings. The likely result, when cognitive complaints and other warning signs are evident but not pursued in primary care, is increased disease burden due to delayed or obviated treatment of reversible conditions, delayed recognition of iatrogenic causes such as anti-cholinergic agents and polypharmacy, delayed use of appropriate medical and support services, and forestalled critical planning. DetectCID aims to establish, test and validate paradigms for detecting cognitive impairment, including dementia, when a patient, relative, or care provider indicates concern, in primary care and other forms of everyday clinical practice. This includes addressing barriers that are specific to health disparities populations in the United States, because there is evidence that missed detection of cognitive impairment, including dementia, is even more prevalent among older African-Americans, Hispanics and other health disparities populations than among older whites. One reason for the under-detection of cognitive impairment, including dementia, is that the existing detection tools have not been tested and standardized into user-friendly paradigms suitable for primary care in typical large and diverse populations in the United States. Adding to this, there has been a lack of development of implementation strategies for incorporation of detection of cognitive impairment into everyday clinical practice. Moreover, a challenge specific to heath disparities populations is the need for tools that are appropriate for the population being assessed. For example, few paradigms have been designed around factors such as low literacy or stigma associated with dementia, which may impact detection of cognitive impairment in certain populations. Taken together, these factors represent a barrier to rigorously assessing the public health importance and impact of detecting cognitive impairment in older adults.
PROJECT TIMELINE
The DetectCID Consortium is funded by a UG3/UH3 cooperative agreement with the National Institute of Neurological Disorders and Stroke for 5 years and beginning September 2017. During the UG3 phase (1 to 1.5 years in length) the Consortium will work on paradigm development, including harmonization and establishing common formats and interoperability among testers and sites that will facilitate very broad application, nationwide, across all types of primary and other everyday care clinical settings. During the UH3 phase (3.5 to 4 years in length) the Consortium will focus on cohort and population testing, optimization and validation, with significant testing in primary care and other everyday clinical settings.
Clinical Methodologies
The research programs at each of three sites have constructed paradigms for detecting incident cognitive impairment, including dementia, designed to be applicable to large and varied adult populations in the United States. Paradigms include strategies for successful implementation in primary care and other everyday clinical settings, and allow categorization of patients about whom a concern has been raised (by the patient themselves, a relative, or care provider) regarding cognitive impairment into one of the following two groups, with a rationale and recommendations for follow-up:- No objective cognitive impairment detected. This category includes individuals for whom the cause of the concern is unknown or appears to be a consequence of a condition that is not cognitive impairment (e.g. hearing loss). Appropriate recommendations could include measures such as periodic re-assessment, or referral for medical follow-up of the underlying condition that is not cognitive impairment;
- Detection of cognitive impairment. This category includes both individuals with cognitive impairment due to underlying medical condition(s) that may be managed in primary care, and in some instances may be reversible, as well as individuals with cognitive impairment detected that requires workup by a specialist. Appropriate recommendations could include treatment in primary care if appropriate, follow-up clinical assessment, and/or referral to one or more specialists.
Committees & Governance
Cross-Consortium Coordinating Team
The Cross-Consortium Coordinating Team (CCCT) at the University of California, San Francisco facilitates consortium-wide functions including driving cross-project coordination, including for consortium calls, scientific synergy and collaboration, and meetings and committees. The CCCT enables and drives both logistic and scientific synergy.
Consortium Steering Committee
The Consortium Steering Committee acts as the governing leadership and decision-making body for the project. This Committee’s primary purview is to maintain the cross-project scientific synergy of the Consortium. They oversee cross-validation projects, establish milestones and timelines, and monitor progress. They coordinate the activities of and gather input from critical stakeholders whose investment and support are important for project success, including the FDA, CMS, Alzheimer’s Association, etc. This Committee reviews proposals for cross-site projects and ensures equitable shared-data publication practices across sites. They also receive reports from and provide scientific, logistical, and administrative governance for the other Committees.
Data Sharing and Harmonization Committee
The Data Sharing and Harmonization Committee, composed of clinician scientists and individuals with research technology expertise, identifies opportunities for, and implements practices that promote data sharing and harmonization. It is the purview of this Committee to ensure maximal data sharing of Consortium data, both within and beyond the Consortium, and to investigate and make recommendations about data sharing tools and repositories that would facilitate this sharing. This Committee is responsible for establishing reliance agreements across site IRBs to facilitate sharing of de-identified clinical data.
Clinical Practice Committee
The Clinical Practice Committee, composed of representatives with expertise in implementation science, primary care, and health disparities research, works to implement paradigms and relationships with primary care providers, health systems, and health disparities populations. This Committee is responsible for guiding successful strategies for the implementation of protocols in everyday clinical settings across health disparities populations, and to guide implementation research protocols and benchmarks for success.
Analysis Committee
The Analysis Committee, composed of experts in statistics, research design, and data science, is responsible for study design and statistical analysis. This Committee is dedicated to providing a sophisticated approach to research design and statistical analysis plans for the data being collected throughout the Consortium and with an emphasis on cross-validation projects. This Committee maintains an updated and clear understanding of the key scientific goals of the project, as articulated by the Steering Committee, and works with the project leadership to derive specific statistical analysis plans to most effectively and efficiently answer the Consortium’s scientific questions.