NCT06740162

Brief Summary

Purpose: Conduct a wait-list randomized controlled trial (RCT) of an inclusive physical activity program called PACE for adults with intellectual disability (ID) who are not yet showing signs of Alzheimer's Disease (AD)/age-related dementias (ARD). Participants: Participants include 120 adults with ID, their caregivers, and their coaches (up to 360 individual participants, grouped as triads), recruited through the University of North Carolina at Chapel Hill and the University of Arkansas. Participants also include 16 exercise professionals. Procedures (methods): Each cohort will include 20 triads who are randomly assigned to the PACE program or the waitlist control group.

Trial Health

77
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
376

participants targeted

Target at P75+ for not_applicable

Timeline
25mo left

Started Jan 2025

Longer than P75 for not_applicable

Geographic Reach
1 country

2 active sites

Status
recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress39%
Jan 2025Jun 2028

First Submitted

Initial submission to the registry

December 13, 2024

Completed
5 days until next milestone

First Posted

Study publicly available on registry

December 18, 2024

Completed
23 days until next milestone

Study Start

First participant enrolled

January 10, 2025

Completed
2.9 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

December 1, 2027

Expected
6 months until next milestone

Study Completion

Last participant's last visit for all outcomes

June 1, 2028

Last Updated

February 23, 2026

Status Verified

February 1, 2026

Enrollment Period

2.9 years

First QC Date

December 13, 2024

Last Update Submit

February 19, 2026

Conditions

Keywords

physical activityintellectual disabilityage-associated memory impairmentagingAlzheimer Disease prevention

Outcome Measures

Primary Outcomes (2)

  • Number of Steps Per Day as Measured by the ActiGraph GT9X Link

    The Actigraph GT9X Links measures daily step counts. Step counts less than 2500 are classified as basal, step counts between 2500 to 4999 are classified as limited, step counts between 5000 to 7499 are classified as low, step counts between 7500-9999 are classified as somewhat active, step counts between 10000 to 12499 are classified as active, and step counts over 12500 are classified as very active.

    Baseline, post-intervention (16 weeks)

  • Minutes of Moderate-to-Vigorous Activity Per Day as Measured by the ActiGraph GT9X Link

    The Actigraph GT9X Links measures activity counts each minute of wear time. Each activity count over 3,941 equals 1 minute of moderate-vigorous physical activity. A total of 150 or more weekly MVPA minutes meets Physical Activity guideline recommendations.

    Baseline, post-intervention (16 weeks)

Secondary Outcomes (11)

  • Body Composition from Baseline as Measured by percentage of total body mass

    Baseline, post-intervention (16 weeks), Follow-up (74 weeks)

  • Wellbeing from Baseline as Measured by the World Health Organization Quality of Life Assessment and Disabilities Module

    Baseline, post-intervention (16 weeks)

  • Daily Living Skills from Baseline as Measured by the Waisman Activities of Daily Living Scale

    Baseline, post-intervention (16 weeks)

  • Mental and Cognitive Functioning from Baseline as Measured by the NIH-Toolbox Cognitive Battery

    Baseline, post-intervention (16 weeks)

  • Psychological Well-Being, and Social Relationships from Baseline as Measured by the NIH Toolbox Emotion Battery

    Baseline, post-intervention (16 weeks)

  • +6 more secondary outcomes

Study Arms (2)

PACE Program

EXPERIMENTAL

The 16-week intervention includes: (1) a weekly group fitness class for adults with ID, (2) web-based training and resources for coaches and exercise professionals; (3) weekly coaching meetings for coaches and adults with ID, and (4) daily/weekly interactions with the PACE interactive web-based dashboard for adults with ID.

Behavioral: PACE Program

Waitlist Control

NO INTERVENTION

Participants assigned to the Waitlist Control Group will not receive any intervention during this interval. Participants will receive the PACE Program after the completion of the 16-weeks for the Intervention Group.

Interventions

PACE ProgramBEHAVIORAL

The PACE program is a 16-week inclusive exercise program taught and adapted by certified Inclusive Fitness Specialists. Study participants, called athletes, will engage in the fitness class with non-study participants with and without disabilities. Athlete participants will also meet weekly with their coaches (also study participants) to discuss goal setting and interact with the web-based dashboard.

PACE Program

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersYes
Age GroupsAdult (18-64), Older Adult (65+)

You may qualify if:

  • ages 18 and older with a prior clinical diagnosis of ID, confirmed by scores \< 70 and + 90% on the Leiter-3 International Performance Scales and/or an adaptive behavior measure using the Vineland Adaptive Behavior Scales,
  • Medical clearance to participate in moderate-to-vigorous physical activity as determined by the American College of Sports Medicine (ACSM) preparticipation algorithm,
  • Adult does not show clinically elevated symptoms of Alzheimer's Disease (AD)/ Alzheimer's Disease and Related Dementias (ADRD) as indicated by a score of \< 20 on the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities.
  • One caregiver/guardian is able and willing to participate.
  • must tolerate at least 8 hours of daily wear-time of Actigraph device during initial assessment period (4 of 7 days),
  • must average 20 minutes or less of moderate to vigorous physical activity (MVPA) minutes per day (140 MVPA minutes or less across 7-day period measured during the initial assessment period, and
  • must reside in North Carolina or Arkansas.

You may not qualify if:

  • Diagnosis of AD, dementia, or related disorders. Participants will not be excluded based on gender, race, or ethnicity. There will be no upper age limit due to the heterogeneity of onset of AD/ADRD in individuals with ID.
  • access to the internet and a mobile device,
  • has weekly contact with the adult participant with ID,
  • can converse and read in English to comprehend intervention materials and website content, and
  • must reside in North Carolina or Arkansas
  • ability to converse and read in English to comprehend and answer interview questions, (2) must care for an adult with ID who is willing to participate in the study,
  • must reside in North Carolina or Arkansas, and
  • must attend all study visits with adult with ID.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (2)

University of Arkansas

Fayetteville, Arkansas, 72701, United States

NOT YET RECRUITING

University of North Carolina

Chapel Hill, North Carolina, 27517, United States

RECRUITING

Related Publications (6)

  • Savage MN, Tomaszewski BT, Hume KA. Step It Up: Increasing Physical Activity for Adults With Autism Spectrum Disorder and Intellectual Disability Using Supported Self-Management and Fitbit Technology. Focus Autism Other Dev Disabl. Published online January 25, 2022:108835762110737. doi:10.1177/10883576211073700

    BACKGROUND
  • Diaz KM. Leisure-time physical activity and all-cause mortality among adults with intellectual disability: the National Health Interview Survey. J Intellect Disabil Res. 2020 Feb;64(2):180-184. doi: 10.1111/jir.12695. Epub 2019 Dec 2.

    PMID: 31788881BACKGROUND
  • De la Rosa A, Olaso-Gonzalez G, Arc-Chagnaud C, Millan F, Salvador-Pascual A, Garcia-Lucerga C, Blasco-Lafarga C, Garcia-Dominguez E, Carretero A, Correas AG, Vina J, Gomez-Cabrera MC. Physical exercise in the prevention and treatment of Alzheimer's disease. J Sport Health Sci. 2020 Sep;9(5):394-404. doi: 10.1016/j.jshs.2020.01.004. Epub 2020 Feb 4.

    PMID: 32780691BACKGROUND
  • Sinai A, Bohnen I, Strydom A. Older adults with intellectual disability. Curr Opin Psychiatry. 2012 Sep;25(5):359-64. doi: 10.1097/YCO.0b013e328355ab26.

    PMID: 22744404BACKGROUND
  • Shooshtari S, Martens PJ, Burchill CA, Dik N, Naghipur S. Prevalence of Depression and Dementia among Adults with Developmental Disabilities in Manitoba, Canada. Int J Family Med. 2011;2011:319574. doi: 10.1155/2011/319574. Epub 2011 Aug 8.

    PMID: 22295184BACKGROUND
  • McCallion P, McCarron M. Ageing and intellectual disabilities: a review of recent literature. Curr Opin Psychiatry. 2004;17(5):349-352. doi:10.1097/01.yco.0000139968.14695.95

    BACKGROUND

Related Links

MeSH Terms

Conditions

Intellectual DisabilityNeurodevelopmental DisordersAutism Spectrum DisorderDown SyndromeFragile X SyndromeCri-du-Chat SyndromeDe Lange SyndromeX-Linked Intellectual DisabilityPrader-Willi SyndromeRubinstein-Taybi SyndromeTrisomy 13 SyndromeWAGR SyndromeWilliams SyndromeMotor Activity

Condition Hierarchy (Ancestors)

Neurobehavioral ManifestationsNeurologic ManifestationsNervous System DiseasesSigns and SymptomsPathological Conditions, Signs and SymptomsMental DisordersChild Development Disorders, PervasiveAbnormalities, MultipleCongenital AbnormalitiesCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesChromosome DisordersGenetic Diseases, InbornSex Chromosome DisordersGenetic Diseases, X-LinkedHeredodegenerative Disorders, Nervous SystemImprinting DisordersObesityOverweightOvernutritionNutrition DisordersNutritional and Metabolic DiseasesDysostosesBone Diseases, DevelopmentalBone DiseasesMusculoskeletal DiseasesCraniofacial AbnormalitiesMusculoskeletal AbnormalitiesHeart Defects, CongenitalCardiovascular AbnormalitiesCardiovascular DiseasesHeart DiseasesWilms TumorNeoplasms, Complex and MixedNeoplasms by Histologic TypeNeoplasmsKidney NeoplasmsUrologic NeoplasmsUrogenital NeoplasmsNeoplasms by SiteNeoplastic Syndromes, HereditaryAniridiaEye AbnormalitiesEye DiseasesEye Diseases, HereditaryIris DiseasesUveal DiseasesDisorder of Sex Development, 46,XYDisorders of Sex DevelopmentUrogenital AbnormalitiesFemale Urogenital DiseasesFemale Urogenital Diseases and Pregnancy ComplicationsUrogenital DiseasesKidney DiseasesUrologic DiseasesMale Urogenital DiseasesGonadal DisordersEndocrine System DiseasesAortic Stenosis, SupravalvularAortic Valve StenosisAortic Valve DiseaseHeart Valve DiseasesBehavior

Study Officials

  • Brianne R Tomaszewski, PhD., MPH

    University of North Carolina, Chapel Hill

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Brianne R Tomaszewski, PhD, MPH

CONTACT

Kara Hume, PhD

CONTACT

Study Design

Study Type
interventional
Phase
not applicable
Allocation
RANDOMIZED
Masking
SINGLE
Who Masked
OUTCOMES ASSESSOR
Purpose
TREATMENT
Intervention Model
PARALLEL
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

December 13, 2024

First Posted

December 18, 2024

Study Start

January 10, 2025

Primary Completion (Estimated)

December 1, 2027

Study Completion (Estimated)

June 1, 2028

Last Updated

February 23, 2026

Record last verified: 2026-02

Data Sharing

IPD Sharing
Will share

Deidentified individual data that supports the results will be shared beginning 9 to 36 months following publication provided the investigator who proposes to use the data has approval from an Institutional Review Board (IRB), Independent Ethics Committee (IEC), or Research Ethics Board (REB), as applicable, and executes a data use/sharing agreement with UNC.

Shared Documents
STUDY PROTOCOL, SAP, ICF, ANALYTIC CODE
Time Frame
beginning 9 and continuing for 36 months following publication
Access Criteria
Investigator has approved IRB, IEC, or REB and an executed data use/sharing agreement with UNC.

Locations