The Clinical Core serves the needs of the Massachusetts ADRC (MADRC) and supports local and national Alzheimer research by establishing and maintaining a Longitudinal Cohort (LC) of diverse ethnic and racial backgrounds who contribute to research into the etiology, prevention and treatment of degenerative brain diseases. The primary role of this clinical enterprise is to provide systematic data collection to the National Alzheimer Coordinating Center (NACC) and to our local research projects on well characterized, longitudinally followed subjects spanning the full range of cognitive function from normal to dementia.
The Core is specifically structured to support our Center’s focus on understanding and identifying the earliest preclinical stages of disease. Beyond this, we seek to work with the Center's other Cores: 1. To catalyze (Aims 1-8) clinical research on AD and related disorders by supporting local and national research projects; 2. To innovate (Aims 3-5) in the development of assessment tools to meet the challenges of early detection and intervention; and 3. To educate (Aims 9-10) by recruiting and training future generations of clinical research leaders and by working with the Outreach Core to educate and inform the community about dementia and research advances and offer them opportunities to participate in local, national, and international research studies.
Our specific aims:
Aim 1. To recruit and maintain a Longitudinal Cohort (LC) of individuals from diverse ethnic and socioeconomic backgrounds who span the spectrum of cognition from cognitively normal elderly to Mild Cognitive impairment (MCI) to dementia, with a special focus on asymptomatic at-risk individuals and those in the earliest symptomatic stages of AD, frontotemporal dementia (FTD), Lewy Body disease (LBD), Parkinson's disease dementia (PDD), Vascular Cognitive Impairment (VCI), and related disorders.
Aim 2. To complete an annual Uniform Data Set (UDS) evaluation on LC participants and, in collaboration with the Data Core, to enter and submit these data to NACC in a timely fashion.
Aim 3. To enhance and innovate in cognitive and behavioral evaluations beyond the UDS, providing continuity with earlier measures in our Center, supporting integrated research studies, and developing novel cognitive and behavioral assessment tools suitable for early disease detection and early intervention trials, and able to cross cultural and language barriers.
Aim 4. To support the Genetics and Biomarkers Program in the Neuropathology Core by obtaining blood and CSF from our subjects for local and national projects, and linking them with clinical data.
Aim 5. To support neuroimaging initiatives in collaboration with the new Neuroimaging Core, including identifying existing scans on our LC subjects, recruiting additional subjects for local and national neuroimaging projects, and linking scan data to clinical data.
Aim 6. To support the development of a Recruitment Registry in the Outreach Core that includes patients from our affiliated clinical units at Mass General Hospital (MGH) and Brigham & Women's Hospital (BWH), community volunteers, and LC subjects no longer appropriate for annual follow-up. The Registry will supplement the LC for rapid recruitment of research participants for affiliated studies, and also allows us to efficiently replenish the LC itself as needed.
Aim 7. To refer subjects from the LC, our Recruitment Registry, and the MGH Memory Disorders Unit to research projects supported by the MADRC, as well as to national multi-center projects. We will systematically review our LC participants, our planned Recruitment Registry, and patients seen in the MGH Memory Disorders Unit for eligibility for supported research projects, and make referrals as appropriate.
Aim 8. To enhance autopsy rates and improve clinico-pathological correlation by working with the Neuropathology Core to increase the number of participants who agree to autopsy, to ensure that autopsies proceed smoothly, and to link clinical data to anatomic, pathologic and molecular indices of disease.
Aim 9. To train promising new clinical researchers in dementia research and, in collaboration with the Admin Core, to provide a stimulating environment for career and leadership development.
Aim 10. To promote dementia prevention efforts and offer research opportunities, in collaboration with the Outreach Core, to individuals in the community, particularly those from underserved minority groups.