For Investigators

The NIA-LOAD FBS was established to recruit multiplex LOAD families for genetic research. Longitudinal clinical data and biological samples from all participating family members and controls, including both affected and unaffected members of these families, are stored at Columbia University Irving Medical Center and the National Centralized Repository for Alzheimer's Disease and Related Dementias (NCRAD), respectively.

Over the past decade the NIA-LOAD FBS, in collaboration with NCRAD, has contributed samples and data to all of the programs within the National Institutes of Health/National Institute on Aging Alzheimer's Disease Genetics Program, in the United States and internationally. Currently, the study collects:

Domains of Study
Measures
1. Medical History and Medications Semi-structured review of medical history and medication use, including history of tremor, stroke/CVA/TIA, heart disease, hypertension, head injury, seizure disorder, psychiatric disorders
2. Neuropsychological Memory (short- and long-term recall), Orientation, Abstract Reasoning, Executive (frontal) function, Visuospatial Function, Language
3. Neurological Structured neurological and functional assessment, Blessed Dementia Rating Scale, Clinical Dementia Rating Scale (CDR), Unified Parkinson's Disease Rating Scale (UPDRS; motor portion)
4. Demographic Age, sex, race, ethnicity, education, socioeconomic status, use of alcohol and tobacco
5. Physical Ability Arm and leg mobility
6. Functional Ability Assessment Self-reported Activities of Daily Living (ADL) and Instrumental ADL (IADL) ability
7. ADL and IADL Assessment Katz’s index of ADL; Lawton’s IADL scale
8. Physiological and Homeostatic Blood Pressure (Medtronix), Pulse
9. Anthropomorphic1 Height, Weight
 9a. Anthropomorphic2 Body Mass Index, Waist, Hip Circumference
10. Psychiatric CES-D scale of depression
11.  Genetic Family history of dementia, APOE genotype, GWAS, WES, WGS DNA extraction
12. Plasma ** Serum and plasma prepared and frozen at multiple assessments
13. CSF Cerebrospinal fluid frozen at one time point, at baseline or follow up

14. PBMC *

RNA
15. Brain Tissue Brain autopsy. Fixed and/or fresh brain tissue frozen.

*beginning stages of collection; **planned

 

Summary of  NIA-LOAD FBS Data Collection
Ethnic # Of Families  # Of Individuals
Cau/AA 1045 6,154
Hispanic 308 2656
Unrelated controls 0 1030
Total 2383 9840

 

Genetic Data
  N Individuals
GWAS 5,599
WGS 1,226
WES 1,484

Investigators seeking access to clinical data and/or biological samples from the NIA-LOAD FBS should: