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National Alzheimer's Coordinating Center
National Alzheimer's Coordinating Center
The NIA Alzheimer’s Disease Research Centers Program
National Alzheimer’s Coordinating Center

Forms and documentation

Uniform Data Set (UDS)

The Uniform Data Set version 4 is now available for use at the ADRCs. The UDS contains longitudinal data, collected since 2005 during standardized annual evaluations conducted at the NIA-funded Alzheimer’s Disease Research Centers (ADRCs) across the country. Participants in the study represent the entire Clinical Core enrollment of the ADRCs, with cognitive status ranging from demented to mild cognitive impairment to cognitively normal. A subset of UDS participants are also evaluated with one of the additional sets of diagnosis-specific data-collection forms, the FTLD Module or the LBD Module.
For clinicians planning to administer the UDS, training materials are available.

For additional information on the development of UDSv4, see the UDSv4 Updates Page.

This overview of NACC data outlines UDS study population, collection methodology, and up-to-date participant statistics.

To use NACC forms in research outside of the ADRC program, please submit a Permission Request.

UDSv4 forms are currently only available in English. Please check back for Spanish and Chinese versions coming soon!

Essential documents

The Researchers Data Dictionary for the UDS is intended as the first and primary resource for those analyzing NACC clinical and demographic data. Updates to the RDD for UDSv4 are coming soon. See also this overview of the data available at NACC.

Initial Visit (IVP)Follow-up Visit (FVP)
Forms Packet, English

The full packet, containing all data collection forms in English. Alternatively, individual forms can be downloaded below.

  
Forms Packet, Spanish

The full packet, containing all data collection forms in Spanish.

 In Development
Forms Packet, Mandarin

The full packet, containing all data collection forms in Mandarin.

In DevelopmentIn Development
Forms Packet, Cantonese

The full packet, containing all data collection forms in Cantonese.

In DevelopmentIn Development
Coding Guidebook

The guidebooks provide detailed, annotated explanations of each form on an item-level basis, with instructions, operational definitions, and references.

 
Best Practices for Reporting Biomarkers

 
Data Element Dictionary

In a compact format, the DEDs list all the variables and provide a detailed description, including data type, allowable codes, and information on skip patterns.

  
Guidance for UDS Submission

Form packet checklist

 

Individual forms

Initial Visit
(IVP)		Follow-up Visit
(FVP)
  • A1: Participant Demographics  
    A1a: Social Determinants of Health Optional Form  
    A2: Co-participant Demographics  
    A3: Participant Family History  
    A4: Participant Medications  
    A4a: ADRD-Specific Treatments  
    A5/D2: Participant Health History/Clinician-assessed Medical Conditions  
    B1: Evaluation Form - Vital Signs and Anthropometrics  
    B3: Unified Parkinson's Disease Rating Scale (UPDRS) - Motor Exam  
    B4: CDR® Dementia Staging Instrument Plus NACC FTLD Behavior & Language Domains (CDR® Plus NACC FTLD)  
    B5: Behavioral Assessment - Neuropsychiatric Inventory Questionnaire (NPI-Q)  
    B6: Behavioral Assessment - Geriatric Depression Scale (GDS)  
    B7: Functional Assessment - NACC Functional Assessment Scale (FAS)  
    B8: Evaluation Form - Neurological Examination Findings  
    B9: Clinician Judgment of Symptoms  
    C2: Neuropsychological Battery Scores  
    C2T: Neuropsychological Battery Scores for T-cog  
    D1a: Clinical Syndrome  
    D1b: Etiological Diagnosis and Biomarker Support  
  • A1: Información Demográfica del Participante 

    In development

    A1a: Determinantes Sociales de la Salud 

    In development

    A2: Información Demográfica del Co-Participante 

    In development

    A3: Historia Familiar del Participante 

    In development

    A4: Medicamentos del Participante 

    In development

    A4a: Tratamientos para la Enfermedad de Alzheimer y Demencias Relacionadas 

    In development

    A5/D2: Historial de Salud del Participante / Condiciones Médicas Evaluadas por el Profesional Clínico 

    In development

    B1: FORMULARIO DE EVALUACIÓN — Signos Vitales y Antropometría 

    In development

    B3: Escala Unificada de la Enfermedad de Parkinson (UPDRS1) - Examen Motor 

    In development

    B4: CDR® Instrumento para la Identificación de Etapas de la Demencia y Dominios del Comportamiento y Lenguaje NACC FTLD (CDR® con NACC FTLD) 

    In development

    B5: EVALUACIÓN CONDUCTUAL – Inventario Neuropsiquiátrico (NPI-Q) 

    In development

    B6: EVALUACIÓN CONDUCTUAL – Escala de Depresión Geriátrica (GDS) 

    In development

    B7: EVALUACIÓN FUNCIONAL – Escala de Evaluación Funcional de NACC (FAS) 

    In development

    B8: EVALUACIÓN – Hallazgos de la Evaluación Neurológica  

    In development

    B9: Juicio Clínico de los Síntomas 

    In development

    C2: Puntajes de la Batería Neuropsicológica 

    In development

    • Worksheets
    • CERAD Flip Book
    • MiNT Stimuli

    • NOTE: Access to C2/C2T documentation is granted with an approved data request. For data requests approved after 2/7/2025, please reference the email entitled 'Data Request Number XXXXX from NACC' for the password. Please contact NACC at consnacc@uw.edu if you have a previously approved data request and need access to the C2/C2T documentation.

    C2T: Neuropsychological Battery Scores for T-cog

    In development

    In development

    D1a: Síndrome Clínico 

    In development

    D1b: Diagnóstico Etiológico y Biomarcadores 

    In development