Cohort Descriptives

Variable Response
Cohort name Emory Healthy Brain Study
Cohort acronym EHBS
General Study Overview The Emory Healthy Brain Study is a sub-study of the Emory Healthy Aging Study, the largest-ever clinical research study in Atlanta that seeks to better understand aging and age-related diseases. While the Emory Healthy Aging Study is an online study, participants in the Emory Healthy Brain Study will come to Emory for collection of biological specimens.
To participate in the Emory Healthy Brain Study, individuals will complete a series of tests, including blood draws, a lumbar puncture to collect spinal fluid, an eye scan, and a heart and vascular assessment. Participants will also take memory tests and have a gait analysis done, which involves walking on a special mat to examine the mechanics of how they move. Those who complete the tests, typically done in a single day, will receive compensation. The study is open to generally healthy individuals ages 45-75 years old and participation is completely voluntary.
Institution name Emory University
Department name Emory Brain Health Center
City Atlanta, Georgia, USA
Study or database website

https://healthyaging.emory.edu/brain-study/

Principal Investigator (PI): Name Dr James Lah
PI: Address 12 Executive Park Drive NE, Atlanta, GA, USA
PI: email

james.lah@emory.edu

PI: phone +14047273509
Administrative Contact (AC): Name Petek Ozgul
AC: Address 12 Executive Park Drive NE, Atlanta, GA, USA
AC: email Petek.ozgul@emory.edu
Technical Contact/Data manager (TC): Name Aditya Singh Bisht
TC: Address 12 Executive Park Drive NE, Atlanta, GA, USA
TC: email

asbisht@emory.edu

TC: phone +14047780231
Population based study? Yes
Family based study? No
Clinical based sample? No
Is there follow-up data available? No
Were participants included prior to development of dementia (may refer to controls only)? Yes
Were participants included prior to development of MCI (may refer to controls only)? Yes
How is data collected? In person
Who carries out data collection? Clinicians
Clinical staff
Does this take place in participants' homes or at a central location? Central: Clinic
Do participants take part individually or are families/partners involved? Individually
Dementia cases ascertained as part of study: Yes
Diagnosis based on review of existing clinical data No
Was diagnosis/primary outcomes made blind to exposure variables? No
How regular is follow-up? Every 2 years
Is study ongoing? Yes
Is study still recruiting? Yes

Demographic and Clinical Information

Variable Response
Demographics
Age Yes
Age at time of diagnosis of dementia No
Age at last follow-up No
Age at time of death No
Sex No
Ethnicity Yes
Education Yes
Physical examinations
Any physical examination performed? Yes
Blood pressure Data available
Weight Data available
Height Data available
Visual fields (direct/indirect) Data available
Colour vision Data available
Medical conditions
Cardiovascular disease data Yes
Myocardial infarction Data available
Medication use for CVD Data available
Comments: Primarily Coumadin
Hypertension Data available
Systolic/diastolic BP Data available
Hypotension Data available
Hypercholesterolemia Yes
Virus testing No data available
Olfactory sensitivity No
Medication use Yes
Cancer Data available
Diabetic Status Data available

Cognitive Outcomes

Variable Response
Any domain-specific cognitive test performed? Yes
Verbal Memory Data available
Data available
Comments: Verbal Fluency Phonemic Test
Language Data available
Data available
Comments: Multilingual Naming Test
Vigilance Data available
Data available
Latent memory Data available
Data available
IQ data available? No
NART Yes
Cognitive background? Yes
Years of education Yes
Level of education No
Standard dementia global cognition scales? Yes
MMSE No
MoCA Yes
ADAS-Cog No
Addenbrooke's Cognitive Exam No
3MS No
GPCOG No

Non-Cognitive Clinical Outcomes

Variable Response
Dementia diagnosis
Alzheimer's dementia Yes
Parkinsons Disease Yes
MCI Yes
Subjective complaint Yes
Functional rating scales
Any information on subjective complaints collected? Yes
Any neuropsychiatric rating scale administered? Yes
Health service utilisation
Any Health Resource Utilisation Collected ? No
Other neurological or psychiatric measurements? Yes
Stroke type Yes
Transient Ischemic Attack Yes
Carotid plaques No
Any head trauma data? Yes
Loss of consciousness Yes

Imaging

Variable Response

Genetics

Variable Response
Overview
Gene screening
APOE Yes

Biological samples

Variable Response
Blood collected Yes
Plasma Yes
Serum Yes
RNA Yes
DNA Yes
Abeta 1-40 Yes
Abeta 1-42 Yes
Blood Metabolic Analytes
Are laboratory protocols and storage information available for bloods Yes
Urine collection
Autopsy data
Saliva
CSF
CSF collected Yes
Are CSF laboratory protocols and storage information available? Yes

Brain donation

Variable Response
Is brain donation part of the existing protocol? No
Are information sheets made available to representative or consultees? Yes
Are retrospective interviews carried out after the participant's death? No
Is there a procedure for declining donation/failed recruitment/project termination? Yes
Has an actuarial analysis been completed? No

Lifestyle

Variable Response
Smoking Yes
Pack years Data available
Current smoking Data available
Former smoking Data available
Alcohol Data available
Units per day/week vs weekend Data available
Abstainers/former users Data available
Binge drinking Data available
Drugs of abuse assessment
Obesity and associated risk factors
BMI Data available
Blood lipids Data available
Physical activity and exercise Yes
Type of exercise: heavy, light Data available
Exercise duration Data available
Objective measures of activity Data available
Diet Yes
Employment status
Employment status Data available
Living situation
Socioeconomic status
Socioeconomic status measures Data available
Sleep assessment
Questionnaires Data available
Actigraphy to measure sleep patterns Data available

Ethics and Engagement

Variable Response
Participant engagement
Is there participant representation in the governance of the cohort? No
Do existing mechanisms for consulting/involving participants exist? Yes
If so, does this happen on an ongoing or an ad hoc basis? Both
Ethics
Is there an ethics advisory or ELSI group within the cohort governance? Yes
Does the cohort include participants who lack capacity? No
Is there a process in place for participants who lose capacity? No
Do participants provide contact information for a person to act as a potential consultee? Yes
Disclosure
Do procedures exist for the disclosure of incidental findings? No
Do procedures exist for the disclosure of clinically relevant information identified as a direct focus of the study? (e.g. a diagnosis of dementia) Yes
Recruitment
How was the cohort recruited (NHS or not, primary or secondary care)? Multiple care settings
Does the study involve ongoing connections with participants' own doctors (e.g. GPs)? No
Consent and recontact
Is there consent for recontact? Yes
If so, under what conditions? Longitudinal cohort study

Data Management

Variable Response
Consent for linkage to routine data