NACC Data Request Form

Please fill in the requested information, then click on the "Continue" button to electronically submit the form. You will be contacted by a NACC staff member within two business days. Note that investigator name, institution, email address, title, abstract, and key words will be displayed on the researcher's page on the NACC website.

NACC cannot ensure that each data request and resulting data set is novel to the NACC database. It is the responsibility of the researcher, not NACC, to identify a unique research hypothesis and ensure there is no significant overlap with other ongoing or published NACC data analyses.

NACC confidentiality agreement

These data are to be used for informational purposes only. Any effort to determine the personal identity associated
with any reported data is prohibited. Distribution or release of data or image files obtained from the National Alzheimer's Coordinating Center to third parties is prohibited. Data requests, analyses, and potential publications using the
information contained in this database are subject to review by NACC and/or the NACC Steering Committee.


Downloading these data indicates that you accept the terms of this agreement:

1.) that you maintain data confidentiality;
2.) that you will not distribute the data or image file to a third party; and
3.) that you will follow NACC publication guidelines (listed below) before seeking to publish results.


NACC publication guidelines

  • All publications, posters and presentations using NACC data must reference the NACC grant number, U01 AG016976.
  • All manuscripts and abstracts using NACC data must be submitted to NACC's
    Manuscript and Abstract Submission System for a brief administrative review prior to journal or conference submission.

Contact Information:



First Name:
Last Name:
Address:
Home Institution:
City:
State:
Zip:
Email Address:
Phone Number:

Is this an update or addendum to a previous NACC data request?
No Yes If yes, please provide the name of the most recent file for which
you are requesting an update.

Project Title:

Brief project description including specific aims: This abstract will be posted for public access in the "Research in Progress"
or "Completed Using NACC Data" section of this website to describe your
ongoing and completed work with NACC data.

Key Word Selection: From the options below, please select 3 to 5 key words that describe your proposed
research using NACC data. For a printable pdf of the key word options, click here. +Clinical Diagnosis / Suspected Etiology / Syndrome

Clinial Diagnosis Normal cognition Dementia Alzheimer's disease / LOAD Early Onset AD Pre-clinical / pre-symptomatic Alzheimer's disease Mild cognitive impairment Impaired, not mild cognitive impairment Lewy body dementia Frontotemporal dementia (FTD) Vascular dementia Primary progressive aphasia (PPA) Huntington's disease Prion disease Parkinson's disease Down's syndrome
+Clinical Measures and Symptoms
Blood pressure Height / weight HIS and CVD / Hachinski ischemic score UPDRS/parkinsonism Gait disturbance / tremor / other movement disorders CDR / CDR global score / CDR sum of boxes NPI-Q / neuropsychiatric symptoms GDS / Geriatric Depression Scale / behavioral assessment FAQ / functional impairment/functional decline Neurological exam / focal deficit Subjective memory complaint Cognitive symptoms Behavior symptoms Motor symptoms
+Neuropsychological Testing
Neuropsychological tests MMSE Test norms Domains Composite scores Test language Dysexecutive function
+Demographics and Characteristics
Education Sex Race Ethnicity Primary language Age Oldest old Living situation / residence type Family history of dementia Informant demographics / characteristics Differences by center / region
+Subject Health History
Vascular risk factors Cardiovascular disease Cerebrovascular disease / stroke / TIA Parkinsonism Seizures / epilepsy Traumatic brain injury / TBI Hypertension Hypercholesterolemia Diabetes Depression Alcohol Smoking Sleep apnea Psychiatric disorders Medications Age at onset of cognitive decline
+Neuropathology / Death
Death Neuropathology Autopsy Vascular pathology Braak stage Neuritic plaques Lewy bodies Tauopathies Frontotemporal lobar degeneration (FTLD) Corticobasal degeneration (CBD) Progressive supranuclear palsy (PSP) Pick's disease Hippocampal sclerosis
+Genetics and Biomarkers
GWAS APOE Biomarkers APP / PS1 / PS2 mutations Other genetic mutations / chromosomal abnormalities
+Study Design
Cross-sectional Longitudinal Cognitive decline / transition Statistical methods ROC analysis Missing data methods Latent class modeling/factor analysis Epidemiology Descriptive / exploratory Clinicopathological/diagnostic accuracy Risk factors Survival analysis / prognosis Clinical trial eligibility Criteria/guidelines

Eligibility Criteria: Please specify the criteria used to define the population under study. For example, specify age limits or minimum neuropsychological scores. For UDS data, please indicate relevant time points (e.g., initial visit only,
all visits etc.)

Data Elements Requested: Please provide a list of the specific variables needed to address the stated aims, research questions or hypotheses. Electronic copies of data collection forms and data element dictionaries are available for the major NACC databases and they should be examined carefully in compiling this list.

https://www.alz.washington.edu/WEB/dataforms-main.html

Researchers are advised to be parsimonious in requesting data, limiting the list of
variables requested to those clearly necessary to address the projects aims. For UDS data, please indicate relevant time points (e.g., initial visit only,
all visits etc.)

Would you prefer a SAS or CSV file format?

Would you like to request magnetic resonance imaging files (MRIs)
for analysis as part of this data request?
If Yes, NACC staff will contact you for specifications.

No Yes

Would you like to talk to a NACC staff member about the data or your
analysis plan?

How did you learn about NACC data? (Select all that apply)

a) Researcher/clinician affiliated with an ADC b) Web search (specify web page found from) c) Conference d) Friend or colleague e) Other (specify)

Please contact NACC at 206-543-8637 or naccmail@u.washington.edu with any questions or concerns.