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Down SyndromeNCT04048759

The Promotion of Physical Activity for the Prevention of Alzheimer's Disease in Adults With Down Syndrome

A study testing Remote Low, Remote High and Personal Coach in people with Down Syndrome and Alzheimer Disease, run by University of Kansas Medical Center at 1 site in United States.

Completed

Finished. The study has ended and is not enrolling. Results may be posted on the official record.

Official record
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Trial summary

The objectives of this study are to determine the feasibility and potential efficacy of remotely delivered group exercise sessions to increase daily moderate to vigorous physical activity in adults with Down syndrome, relative to a usual care control. Read more about this study

Who is it for?
Ages 18 years and older
Conditions the study is for
Down Syndrome, Alzheimer Disease
What is being tested?
Remote Low, Remote High and Personal Coach
Could I receive a placebo?
No, everyone receives an active treatment
How many people
81 participants
Where
1 siteUnited States
Study dates
21 Jan 2020to 22 Nov 2023
Phase
Interventional
Are there results?
Yes, posted in the registrySummary in the doctors' view

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages 18 years and older
  • All sexes
  • No healthy volunteers
  • Adult, Older adult

Who may be able to join

  • age 18 and over.
  • Diagnosis of DS as determined by a Community Service Provider operating in our recruitment area under the auspices of a Community Developmental Disability Organization (CDDO).
  • Sufficient functional ability to understand directions, communicate preferences, wants and needs through spoken language.
  • Living at home with a parent/guardian or in a supported living environment with a caregiver who agrees to serve as a study partner.
  • No plans to relocate outside the study area over the next 12 mos.
  • Internet access in the home.

Who cannot join

  • Diagnosis of dementia as determine by the Cambridge Examination for Mental Disorders of Older People with Down Syndrome and others with intellectual disabilities.
  • Unable to participate in MVPA.
  • Pregnancy during the previous 6 mos., currently lactating or planned pregnancy in the following 12 mos.
  • Serious medical risk, e.g., cancer, recent heart attack, stroke, angioplasty as determined by the PCP.
  • Unwilling to be randomized.
  • Participation in a regular exercise program, i.e. greater than or equal to 20 min/d greater than or equal to 3 d/wk.
  • Contraindications for MRI, including metal implants or devices incompatible with MRI such as pacemakers, claustrophobia, and inability to lay in a supine position.

Trial locations and contacts

1 site in 1 country.

United States1 site
  • University of Kansas Medical Center

    Kansas City, Kansas, 66160

Other trials in United States

About this study

The objectives of this study are to determine the feasibility and potential efficacy of remotely delivered group exercise sessions to increase daily moderate to vigorous physical activity in adults with Down syndrome, relative to a usual care control. Participants will be randomized to attend 40 min remotely delivered group moderate to vigorous physical activity (MVPA) sessions at low frequency (1 session/wk.,RL), high frequency (3 sessions/wk., RH), or usual care control usual care control (UC). In addition to the group MVPA sessions, participants in both the RL and RH groups will also receive a step counter, access to resources for increasing MVPA, and one 20-min remotely delivered individual support/education session/wk. Content for both the RL and RH arms will be identical with the exception of group session frequency (1 vs. 3/wk.). Participants in the UC arm will receive a step counter, access to resources for increasing MVPA, and monthly remote individual support/education).The primary aim is to Assess daily MVPA (min) in the RL, RH, and UC arms at baseline, 3, 6, 9, and 12 mos., and obtain effect sizes for change in MVPA over 12-mos.Secondary Aim 1 is to assess the impact of MVPA on cardiovascular fitness, quality of life, cognitive function, and brain parameters related to Alzheimer's Disease (whole and regional brain volume, functional connectivity, and cerebral blood flow) at baseline, 6, and 12 mos. Secondary Aim 2 will determine the feasibility (retention, session attendance, use of recorded sessions (RH/RL only) of RL, RH, and UC interventions.

Read the detailed description

This research study will compare 3 strategies for the delivery of an intervention to increase moderate to vigorous physical activity (MVPA) in community dwelling adults with Down Syndrome; remotely delivered group MVPA sessions at low (1 session/wk.,RL), high frequency (3 sessions/wk., RH), or usual care control (UC). Adults (age ≥ 18 yrs.) with Down Syndrome will be randomized (2:2:1) to one of the 3 intervention arms for an 12-mo. trial. Cohorts of ~20 adults with Down Syndrome will be recruited and computer randomized. Participants will be stratified by sex and sequentially randomized by the study statistician. Participants in all arms will be provided with an iPad for intervention delivery, Fitbit for self-monitoring MPA, and will be asked to complete 150 min of MPA/wk. Participants in the RL and RH arms will be asked to complete 40 minutes MVPA sessions delivered via Zoom software on an iPad, RL will be provided 1 session/wk, and RH will be provided 3 sessions/wk. Participants in both the RL and RH groups will also receive one 20-min remotely delivered individual support/education session/wk. with a heath coach to discuss progress and provide support. The UC intervention will follow the traditional approach to promote increased MVPA. Participants will receive an iPad tablet loaded with information regarding increasing MVPA and will also receive resistance bands and a Fitbit for self-monitoring MVPA. Monthly 20-min. education/support sessions, identical to the education/support sessions provided in the RL and RH arms, will be delivered to participants and their caregivers remotely on the iPad using FaceTime. All outcomes will be collected by trained research assistants who are blinded to the study condition. The primary outcome, daily MVPA (min) in the RL, RH, and UC arms will be assessed at baseline, 3, 6, 9, and 12 mos. using an accelerometer. All secondary outcomes will be assessed at baselines, 6, and 12 months. Secondary outcomes are to assess the impact of MVPA across the RL, RH, and UC arms on cardiovascular fitness, quality of life, cognitive function and brain parameters related to Alzheimer's Disease (whole and regional brain volume, functional connectivity, cerebral blood flow). Additionally the researchers will determine the feasibility (retention, session attendance, use of recorded sessions (RH/RL only) and safety of RL, RH, and UC arms.

Being tested
Remote Low, Remote High, Personal Coach
Keywords
Physical Activity, Exercise
Medical subject headings
Down Syndrome, Alzheimer Disease, Motor Activity

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

  • Remote LowBehavioural

    Participants will attend 40 min remotely delivered group MVPA sessions once a week, receive a step counter, access to resources for increasing MVPA, and one 20-min remotely delivered individual support/education session/wk.

  • Remote HighBehavioural

    Participants will attend 40 min remotely delivered group MVPA sessions 3x a week, receive a step counter, access to resources for increasing MVPA, and one 20-min remotely delivered individual support/education session/wk.

  • Personal CoachBehavioural

    Participants will receive a step counter, access to resources for increasing MVPA, and monthly remote individual support/education.

Study groups in NCT04048759
Study groupRoleWhat they receive
Remote LowOtherNot described
Receives: Behavioral: Remote Low
Remote HighOtherNot described
Receives: Behavioral: Remote High
Personal CoachOtherNot described
Receives: Behavioral: Personal Coach

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Minutes of Moderate to Vigorous Physical Activity (MVPA) Per Day

    MVPA was assessed using an ActiGraph tri-axial accelerometer.

    Measured: Baseline to 12 months

Secondary outcomes (10)
  1. Cognitive Function

    Working memory, processing speed, multitasking, and episodic memory will be assessed at baseline, 6 and, and 12 months, using tests selected from the widely used Cambridge Neuropsychological Test Automated Battery (CANTAB, Cambridge Cognition, LTD, Cambridge, UK) for Down syndrome. The CANTAB for Down syndrome uses a battery of tests including multitasking, episodic memory, executive function and processing speed.

    Measured: Baseline to 12 months

  2. Cardiovascular Fitness

    Maximal treadmill tests (modified Balke protocol) will be completed at baseline, 6, and 12 months

    Measured: Baseline to 12 months

  3. Change in Quality of Life

    Quality of life will be assessed at baseline, 6, and 12 months with the Personal Well-Being Index Intellectual Disability, which contains 7 items, each corresponding to a quality of life domain: standard of living, health, life achievement, personal relationships, personal safety, community connectedness, and future security. Participants answer questions on a 0-4 scale, with 0 being least happy and 4 being most happy.

    Measured: Baseline to 12 months

  4. Brain Volume

    Brain volume will be measured using structural MRI at baseline, 6, and 12 months

    Measured: Baseline to 12 months

  5. Functional Connectivity

    Functional connectivity will be measured using resting state MRI (rsMRI) at baseline, 6, and 12 months.

    Measured: Baseline to 12 months

  6. Cerebral Blood Flow

    Functional connectivity will be measured using arterial spin labeling at baseline, 6, and 12 months

    Measured: Baseline to 12 months

  7. Retention

    Retention will be measured by the percentage of participants who complete the 12 month intervention, defined as completing the 12 month outcome assessments.

    Measured: Baseline to 12 months

  8. Session Attendance

    Session attendance for both group MVPA and education/support sessions from baseline to 12 months will be obtained from records maintained by the health educator, and expressed as the percent of possible sessions. Attendance at group MVPA sessions will be defined as being logged in to the video conference and remaining on the screen for the entire 30-min session. Attendance at individual support/education sessions, for the both exercise and UC conditions, will be defined as answering the FaceTime call, and being present on screen for the entire session.

    Measured: Baseline to 12 months

  9. Use of Recorded Exercise Sessions

    Use of recorded exercise sessions will be tracked using Dropbox which provides information on how many times each user watched a video.

    Measured: Baseline to 12 months

  10. Reported Serious Adverse Event

    Safety will be measured by number of participants reporting a serious adverse event, i.e., any untoward medical occurrence that results in death, is life-threatening, requires inpatient hospitalization or results in persistent or significant disability/incapacity.

    Measured: Baseline to 12 months

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted7 Aug 2019
  2. Study start21 Jan 2020
  3. Primary completion22 Nov 2023
  4. Study completion22 Nov 2023

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Interventional
Phase
Phase N/A
Primary purpose
Prevention
Allocation
Randomised
Intervention model
Parallel groups
Masking
Single blind
Who is masked
Outcomes assessor
Enrolment
81 participants (actual)
IDs, dates and publications
ClinicalTrials.gov ID
NCT04048759
Sponsor's protocol ID
STUDY00143836
Other IDs
R01AG063909
Status last verified
Jun 2024
First submitted
5 Aug 2019
Last updated
23 Jul 2024
Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
Individual data sharing
No

Publications

  • Ptomey LT, Aschenbrenner AJ, Helsel B, Bodde A, Clina JG, Danon JC, Lepping R, Martin LE, Brucks M, Sherman JR, Forsha DE, Washburn RA, Donnelly JE. The impact of a 12-month randomized exercise intervention on cognitive function and brain volume in adults with down syndrome. Disabil Health J. 2026 Jul 30:102134. doi: 10.1016/j.dhjo.2026.102134. Online ahead of print.

    PubMed 42532804
  • Ptomey LT, Helsel BC, Washburn RA, Montgomery RN, Krebill R, Danon JC, Sherman JR, Forsha D, Bodde A, Szabo-Reed AN, Gorczyca AM, Donnelly JE. The promotion of physical activity for use in Alzheimer's disease prevention trials in adults with Down syndrome: Results from a 12-month randomized trial. Alzheimers Dement (N Y). 2025 Jun 12;11(2):e70115. doi: 10.1002/trc2.70115. eCollection 2025 Apr-Jun.

    PubMed 40520478
  • Frank L, Helsel B, Dodd D, Bodde AE, Danon JC, Sherman JR, Forsha DE, Szabo-Reed A, Washburn RA, Donnelly JE, Ptomey LT. The association between cardiovascular health and cognition in adults with Down syndrome. J Neurodev Disord. 2023 Dec 6;15(1):43. doi: 10.1186/s11689-023-09510-z.

    PubMed 38057709
  • Dodd D, Helsel B, Bodde AE, Danon JC, Sherman JR, Donnelly JE, Washburn RA, Ptomey LT. The association of increased body mass index on cardiorespiratory fitness, physical activity, and cognition in adults with down syndrome. Disabil Health J. 2023 Oct;16(4):101497. doi: 10.1016/j.dhjo.2023.101497. Epub 2023 Jun 16.

    PubMed 37407386
  • Ptomey LT, Szabo-Reed AN, Martin LE, Mayo MS, Washburn RA, Gorczyca AM, Lepping RJ, Lee P, Forsha DE, Sherman JR, Danon JC, Donnelly JE. The promotion of physical activity for the prevention of Alzheimer's disease in adults with Down Syndrome: Rationale and design for a 12 Month randomized trial. Contemp Clin Trials Commun. 2020 Jun 30;19:100607. doi: 10.1016/j.conctc.2020.100607. eCollection 2020 Sep.

    PubMed 32642594

Questions about this trial

What is this clinical trial studying?

A study testing Remote Low, Remote High and Personal Coach in people with Down Syndrome and Alzheimer Disease, run by University of Kansas Medical Center at 1 site in United States.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 6 inclusion and 7 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: finished, as of the sponsor's last update on 23 Jul 2024. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

Are results available for this study?

Yes. Results are posted in the registry (first posted 23 Jul 2024). A summary is in the For doctors view, and the full results are on ClinicalTrials.gov.

How can a doctor refer a patient or contact the research team?

The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Minutes of Moderate to Vigorous Physical Activity (MVPA) Per Day (time frame: Baseline to 12 months). It is what the study was designed to measure, not a finding.

Where can I read the original study information?

On the ClinicalTrials.gov record for NCT04048759, which also lists 5 linked publications.

Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 23 Jul 2024.

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