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.
The UDSv4 is available in both English and Spanish.
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 |  |  |
Forms Packet, Spanish | | In Development |
Forms Packet, Mandarin | In Development | In Development |
Forms Packet, Cantonese | In Development | In Development |
Coding Guidebook |  | |
Best Practices for Reporting Biomarkers | | |
Data Element Dictionary |  | |
Guidance for UDS Submission | |
Individual forms
English
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 | | |
Spanish
Initial Visit (IVP) | Follow-up Visit (FVP) | |
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 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. | | In Development |
C2T: Puntajes Sumarios de la Batería Neuropsicológica T-cog | In Development | In Development |
D1a: Síndrome Clínico | | In Development |
D1b: Diagnóstico Etiológico y Biomarcadores | | In Development |