UP Data Freeze Introduction

The Umbrella Protocol (UP) Data Freeze includes data from the Wisconsin Alzheimer’s Disease Research Center (ADRC) Clinical Core study and the Wisconsin Registry for Alzheimer’s Prevention (WRAP) study. The data freeze is made up of several data tables including variables specific to the Wisconsin ADRC, variables specific to WRAP,  and shared tables with common variables between WRAP and ADRC. Data freezes are processed twice per year

Background

Wisconsin ADRC

The Wisconsin ADRC was established in 2009 with funding from a National Institutes of Health/National Institute on Aging grant for Alzheimer’s Research Centers and has a longitudinal data set of more than 1,000 participants. These participants represent five cohorts: IMPACT, Control, Mild Cognitive Impairment, Alzheimer’s Disease and Other Diagnosis. This center is one of many National Institute on Aging (NIA)-designated Alzheimer’s Disease Research Centers across the United States. The Wisconsin ADRC is associated with the National Alzheimer’s Coordinating Center (NACC), and through that association,  collects and uploads NACC’s uniform data set to their national repository.

WRAP

The WRAP study is one of the world’s largest and longest running studies of individuals at risk for Alzheimer’s disease. The registry includes more than 1,700 individuals, followed over time, to learn more about biological, health and lifestyle factors that may affect the disease. The WRAP study has a comprehensive data set that includes cognition, lifestyle, physical activity, biomarkers, genetics and metabolism. WRAP is not associated with NACC and does not upload data to their national repository, but the study does administer some of the forms from NACC’s uniform data set.

Timeline of Major Changes
Date Summary of Changes
September 2020 WRAP began administering neuropsychological tests over the phone.
August 2020 ADRC began administering neuropsychological tests over the phone.
March 2015 ADRC transitioned from Uniform Data Set (UDS) 2 to UDS3.
November 2009 ADRC began data collection.
November 2001 WRAP began data collection.

UP Tables Index

ADRC Only

  • Neuropsychological battery scores for tests only administered by ADRC

  • Family History/Demographics
    • Visit specific variables such as marital status and family medical history.

  • Neuropsychiatric Inventory Questionnaire (NPI_Q)

  • Geriatric Depression Scale (GDS)

  • Functional Assessment Questionnaire (FAQ)

  • Allergies
    • Data collected between November 2009 and January 2016.

  • Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) - Participant
    • Only administered to the IMPACT cohort.

  • Memory Function Questionnaire (MFQ), Apathy Evaluation Scale (AES-S), Center for Epidemiological Studies Depression Scale (CES-D) - Study partner
    • Only administered to the IMPACT cohort.

  • Medications
    • Includes NACC derived variables for medication classes.

  • Medical History Clinician Report
    • Mostly based on the NACC D2  form introduced in 2015 and collected at each visit.

  • Medical History Self Report
    • Mostly based on the NACC A5 form collected at each visit until March 2015 and only collected at baseline visits after that.

  • Impact UDS2 Supplemental Neuropsych
    • A separate battery administered to a subset of the IMPACT cohort at visit two. Version one of the Rey AVLT was part of this battery.

  • NIH Toolbox
    • Cognitive Battery (March 2016-February 2017)
      • NIH Toolbox Picture Vocabulary Test Age 3+ v2.0
      • NIH Toolbox Flanker Inhibitory Control and Attention Test Age 12+ v2.0
      • NIH Toolbox List Sorting Working Memory Test Age 7+ v2.0
      • NIH Toolbox Dimensional Change Card Sort Test Age 12+ v2.0
      • NIH Toolbox Pattern Comparison Processing Speed Test Age 7+ v2.0
      • NIH Toolbox Picture Sequence Memory Test Age 8+ Form A v2.0
      • NIH Toolbox Oral Reading Recognition Test Age 3+ v2.0

    • Emotion Battery plus oral reading recognition task from the Cognitive Battery (March 2017-Current)
      • NIH Toolbox Positive Affect CAT Age 18+ v2.0
      • NIH Toolbox General Life Satisfaction CAT Age 18+ v2.0
      • NIH Toolbox Meaning and Purpose CAT Age 18+ v2.0
      • NIH Toolbox Emotional Support FF Age 18+ v2.0
      • NIH Toolbox Instrumental Support FF Age 18+ v2.0
      • NIH Toolbox Friendship FF Age 18+ v2.0
      • NIH Toolbox Loneliness FF Age 18+ v2.0
      • NIH Toolbox Perceived Rejection FF Age 18+ v2.0
      • NIH Toolbox Perceived Hostility FF Age 18+ v2.0
      • NIH Toolbox Self-Efficacy CAT Age 18+ v2.0
      • NIH Toolbox Perceived Stress FF Age 18+ v2.0
      • NIH Toolbox Fear-Affect CAT Age 18+ v2.0
      • NIH Toolbox Fear-Somatic Arousal FF Age 18+ v2.0
      • NIH Toolbox Sadness CAT Age 18+ v2.0
      • NIH Toolbox Anger-Affect CAT Age 18+ v2.0
      • NIH Toolbox Anger-Hostility FF Age 18+ v2.0
      • NIH Toolbox Anger-Physical Aggression FF Age 18+ v2.0

WRAP Only

  • Additional neuropsych fields not shared with ADRC

  • Sleep Apnea

  • Medications

  • Medical History Self Report

Shared (Data available for ADRC & WRAP)

  • Diagnosis
    • ADRC and WRAP diagnosis is determined by either a single clinician or by a formal consensus panel.

    • This table includes two summary variables: 'Summary Diagnosis-adjusted by Neuropathology' and 'Summary Diagnosis-Clinical'. If diagnosis changes due to an autopsy, ADRC records this change in the 'Summary Diagnosis-adjusted by Neuropathology' variable. In this situation, WRAP does not record an adjusted diagnosis in this table. This information is stored elsewhere.

  • Neuropsych

  • Family History/Demographics (one record per participant)
    • REGGIE ID 6269 discontinued from ADRC and subsequently enrolled in WRAP. This table will only include one record for this participant, but other tables may have two records, with visit 1 for dual enrollees appearing twice: WRAP baseline & ADRC baseline.

  • Clinicial Dementia Rating (CDR) & QDRS
    • WRAP began administration of the CDR in January, 2012 and of the QDRS in August, 2015. WRAP participants complete the CDR in two cases:
      • QDRS score is 0.5 or higher

      • QDRS score is 0 and the participant is part of a random subset of controls

  • Florida Cognitive Activities Scale (FCAS)

  • Vitals/Labs

  • Diet Questionnaire

  • Sleep Questionnaire

  • Insomnia Questionnaire

  • Memory Function Questionnaire (MFQ), Apathy Evaluation Scale (AES-S), Center for Epidemiological Studies Depression Scale (CES-D) - Participant
    • ADRC only administers to the IMPACT cohort.

  • Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) - Study partner
    • ADRC only administers to the IMPACT cohort.

  • Physical Activity Questionnaire

  • CHAMPS

Neuropsychology Cognitive Testing Summary

The table below summarizes the neuropsychology cognitive testing done by ADRC and WRAP, with notes about the administration of these tests. A green check mark indicates that the test is currently administered.

Test Administered by ADRC Uploaded to NACC by ADRC? Administered by WRAP
MoCA (Montreal Cognitive Assessment) ✅ Replaced the MMSE with the MoCA in 2020. Yes WRAP only administers the clock draw.
Blind MoCA (Montreal Cognitive Assessment) ✅ Blind MoCA began for telephone visits with cognitive testing in 2020. Yes ✅ WRAP administers the Blind MoCA but not the MoCA. This began in 2020.
Craft Story 21 Recall: Immediate and Delayed Yes
Benson Complex Figure Copy: Immediate and Delayed Yes
Number Span: Forward and Backward Yes ✅ The numbers and the span length differ from ADRC.
Category Fluency: Animals and Vegetables Yes ✅ WRAP only does the animal naming portion.
Trail Making Test: A and B Yes
MINT (Multilingual Naming Test) ✅ Replaced the Boston Naming Test from UDS2. Yes ✅ Replaced the Boston Naming Test.
Verbal Fluency: Phonemic F, L & C words F and L words are uploaded.
Rey AVLT (Auditory Verbal Learning Test) ✅ Uses version 2. NACC uses version 1, so variable names in the neuropsych file will not match variable names in the NACC Researcher's Data Dictionary. No ✅ Uses version 1.
WAIS-R (Wechsler Adult Intelligence Scale) Digit Symbol ✅ Discontinued for a while but reintroduced in April 2018. Yes, during the UDS2 collection.
NIH Toolbox No
Language Sample No
MMSE (Mini-Mental Status Examination) Replaced by the MoCA in 2015. Yes, during the UDS2 collection.
WRAT 3 (Wide Range Achievement Test) No
Letter Number Sequencing No
BVMT (Brief Visual-Spatial Memory Test)  No
WMS-R (Wechsler Memory Scale) Logical Memory Administered during UDS2. No longer administered. Yes, during the UDS2 collection.
WASI (Wechsler Adult Scale of Intelligence) No
Cogstate No
Boston Naming Test Administered during UDS2. No longer administered. Yes, during the UDS2 collection. Replaced with MINT on 9/17/2019.
Stroop No Removed from battery on 9/17/2019.
ANART Administered from January 2016 to December 2017. No

For more information about the tests included in the NACC battery, click here

Medical History Self Report Overlap

A Shared Medical History Self-Report table does not exist between the ADRC and WARP due to differences in question response options, but there are similarities between the variables collected. The similarities between these tables are outlined below.

ADRC Variable Description ADRC Variable WRAP Variable Description WRAP Variable
Heart attack/cardiac arrest cvhat Heart Attack (EVER) HrtAtt_E
Cardiac bypass procedure cvbypass Coronary bypass surgery (EVER) CorBypass_E
Congestive heart failure cvchf Congestive Heart Failure (EVER) HrtFail_E
Stroke-by history cbstroke Stroke (EVER) Stroke_E
Transient ischemic attack (TIA) cbtia Transient ischemic attack (TIA) (EVER) TIA_E
Parkinson’s disease (PD) pd Parkinson's disease (EVER) Park_E
Seizures seizures Epilepsy or seizures (EVER) Epi_E
Traumatic brain injury (TBI) tbi Head injury (EVER) HeadInj_E
Hypertension hyperten Hypertension (EVER) Hyperten_E
Diabetes diabetes Diabetes mellitus (EVER) Diab_E
Thyroid disease thyroid Thyroid disease (EVER) ThyDis_E
Sleep apnea apnea Apnea (EVER) Apnea_E
Arthritis arthrit Arthritis (EVER) Arth_E
Bipolar disorder bipolar Bipolar (manic depressive) (EVER) Bip_E
Schizophrenia schiz Schizophrenia (EVER) Schiz_E
Active depression in the last two years/Depression episodes more than two years ago dep2yrs/depothr Depression (EVER)/Depression (Diagnosed since your last WRAP visit) Dep_E/Dep_L
Anxiety anxiety Anxiety or panic disorder (EVER) Anx_E
Cancer (included in ADRC Medical History Clinician Report) cancer Cancer (EVER) Cancer_E
Hyposomnia/Insomnia insomn Insomnia (included in WRAP Sleep Apnea) Insomnia

Additional Data Available at Request

  • Cerebrospinal Fluid (CSF)
    CSF has been historically analyzed in batches, using a crosswalk to convert values and work around lot-to-lot variability. More recently, our center has entered into a collaboration with Roche Diagnostics and has acquired an Elecsys® Immunoassay Analyzer in order to be able to run CSF samples in house using an automated process. For more information about CSF, please contact Erin Jonaitis

  • Brain Images and Derived Imaging Data
    Neuroimaging data are collected from all eligible participants. Images are collected according to the Standardized Centralized Alzheimer’s & Related Dementias Neuroimaging (SCAN) criteria. Neuroimaging data collected from ADRC and WRAP participants include:
    • Anatomical MRI scans: These are standard scanner sequences weighted for identifying and quantifying brain tissue health and volume. These include T1-weighted, T2 weighted, T2* weighted and diffusion weighted scans.

    • Blood flow MRI scans: Scans weighted for cerebral blood flow are obtained. These include multi-delay arterial spin labeling and 4-flow phase contrast methods that measure intrinsic flow-related signals. No IV-contrast is administered.

    • [11C]PiB PET scans: Scans for detecting amyloid burden.  Images are obtained from 0-70 minutes or 50-70 minutes post-injection of a target dose of 15 mCi of [11C]PiB.

    • [18F]MK6240 PET scans: Scans for detecting tau burden.  Images are obtained from 70-110 minutes post-injection of 5-10 mCi of [18F]MK6240.


For more information about brain images and derived imaging data, please contact Bill Bevis

  • OMICS Data
    • APOE
      Over 99% of ADRC participants have donated blood for Apolipoprotein E (ApoE) genotyping. Extracted DNA is shipped to the National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD) for analysis and results are returned to the center on a quarterly basis. WRAP APOE genotype information also includes APOE risk socres that translate those genotypes into measures of relative AD risk.

  • Neuropathological Data
    ADRC and WRAP collect autopsy data using the standardized evaluation form provided by NACC. To view the NACC form administered, please see the link below. 

Version Date Change Reason Primary Author
April 25, 2022 Original  Leah Reuter




Keywords:adrc, wrap, neuropysch, freeze, data, up, shared, cognitive, csf, mri, pet, omics, apoe, neuropath   Doc ID:117860
Owner:Leah W.Group:Wisconsin Alzheimer’s Program
Created:2022-04-08 14:09 CSTUpdated:2022-05-23 09:35 CST
Sites:Wisconsin Alzheimer’s Program
Feedback:  0   0