Submit your data request

Before submitting a request, you are urged to familiarize yourself with the UDS study population and to bear its limitations in mind when you formulate your research question and interpret your data.

TWO TYPES of data files are now available, each based on the most recent data freeze.

• The QUICK-ACCESS FULL DATA FILE contains the complete UDS and Neuropathology data sets from the latest quarterly data archive. It can be provided more quickly — shortly after submitting this request and signing NACC’s Data Use Agreement — but may require more effort on the part of the investigator afterward in understanding the data elements.

To request the Quick-access Full Data File, please select "Other" below, under DATA SET(S) REQUESTED, and then write in "Quick access". Do not select any other data set.

• The CUSTOM FILE is created for the investigator after he or she has carefully specified the file criteria, with or without the guidance of NACC’s research scientists. The custom file is generally provided less than a week after the criteria are fully specified.

TO SUBMIT A REQUEST, please provide the information requested below, and then click SUBMIT. You will be contacted by a NACC staff member within two business days. At that point, you will be asked to confirm your request and sign the NACC Data Use Agreement. Note that investigator name, institution, email address, title, abstract, and key words will be displayed on the Researchers page on the NACC website.

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

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NACC DATA REQUEST FORM

CONTACT INFORMATION:
First name:
Last name:
Title:
Address:
Home institution:
City:
State:
Zip:
Email address:
Phone number:
Are you affiliated with an ADC?

 

Please select the statement below that describes the data request you are submitting today:

This is a new data request.

PROJECT TITLE:

SPECIFIC AIMS (brief project description)

1) State concisely the goals of the proposed research and summarize the expected outcome(s), including the impact that the results of the proposed research will exert on the research field(s) involved.

2) List succinctly the specific objectives of the research proposed, e.g., to test a stated hypothesis, create a novel design, solve a specific problem, challenge an existing paradigm or clinical practice, address a critical barrier to progress in the field, or develop new technology. (BE SPECIFIC.)

These aims will be posted for public access in the section of this website titled "Ongoing and Completed Research Using NACC Data."

 

KEYWORD SELECTION:

From the options below, please select 3 to 5 keywords that describe your proposed research using NACC data. You may wish to refer to the printable PDF of the keyword options.

 

expand symbol Clinical diagnosis / suspected etiology / syndrome

Clinical 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 syndrome

expand symbol 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

expand symbol Neuropsychological testing

Neuropsychological tests

MMSE

Test norms

Domains

Composite scores

Test language

Dysexecutive function

expand symbol 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

expand symbol 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

expand symbol 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

expand symbol Genetics and biomarkers

GWAS

APOE

Biomarkers

APP / PS1 / PS2 mutations

Other genetic mutations / chromosomal abnormalities

MRIs

PET

Specimen or tissue request

expand symbol 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

 

DATA SET(S) REQUESTED:

 

Preferred file format:

SAS
CSV
SPSS
SAS and CSV
SAS and SPSS
CSV and SPSS
SAS, CSV, and SPSS

 

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

Yes/maybe    No thanks

 

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

  • Researcher or clinician affiliated with an ADC
  • Web search (If you linked from another site, please specify that site:)  
  • Conference
  • Friend or colleague
  • GAAIN (Global Alzheimer's Association Interactive Network)
  • Other (specify):  

 

 

 

 

This is an update of, or addendum to, a previous NACC data request.

Please provide the name of the most recent file for which you are requesting an update:

DATA SET(S) REQUESTED:

 

Preferred file format:

SAS
CSV
SPSS
SAS and CSV
SAS and SPSS
CSV and SPSS
SAS, CSV, and SPSS

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

Yes/maybe    No thanks