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RecruitingNCT05985486BOLDUpdated Mar 11, 2026

Brain Outcomes With Lifestyle Change in Down Syndrome

An interventional study of Diet and Health Education in Down Syndrome, Alzheimer Disease and Obesity, sponsored by University of Kansas Medical Center. Recruiting at 1 site in United States. Open to participants aged 18 Years to 64 Years. Per ClinicalTrials.gov, last updated 2026-03-11.

Sponsored by University of Kansas Medical Center · Not applicable, Interventional, and Prevention

Phase
Not applicable
Study type
Interventional
Enrollment
81
Allocation
Randomized
Ages
18 Years to 64 Years
Sex
All
01

Study summary

The goal of this study is to determine if weight loss or changes in dietary intake can help prevent of delay adults with Down syndrome from developing Alzheimer's Disease

Adults with Down syndrome without dementia will be randomized to either a weight loss group or a general health education control group. The weight loss group will be asked to follow a reduced energy diet, attend monthly education sessions delivered remotely and self-monitor diet and body weight using commercially available web-based applications. The control group will be asked to attend remotely delivered monthly education sessions on general health education topics.

All participants will come to the University of Kansas Medical Center, 3 times across 12 months for a blood draw, cognitive testing, a MRI, assessment of height and weight, and assessment of diet intake.

02

Conditions studied

  • Down Syndrome
  • Alzheimer Disease
  • Obesity
03

Who can participate

Ages eligible
18 Years to 64 Years
Sexes eligible
All
Accepts healthy volunteers
No

Inclusion criteria

  • Diagnosis of Down syndrome
  • BMI of 25 to 50 kg/m2
  • Ability to communicate through spoken language.
  • Ability to come to the University of Kansas Medical Center 3 times across 1 year for outcomes testing
  • Living at home with a parent/guardian, or in a supported living environment with a caregiver who assists with food shopping, meal planning, and meal preparation and agrees to serve as a study partner including providing transportation to our facilities for study assessments.

Exclusion criteria

Exclusion Criteria:

  • Diagnosis of dementia
  • Insulin dependent diabetes
  • Participation in a weight management program involving diet or physical activity in the past 6 mos.
  • Dairy allergy
  • Serious medical risk (e.g., cancer, recent heart attack, stroke, pregnancy, angioplasty)
  • Unwilling to be randomized
  • Contraindications for MRI, including metal implants or devices incompatible with MRI such as pacemakers, claustrophobia, and inability to lay in a supine position
  • Use of GLP-1 medications
  • Use of anti-amyloid medications
04

Study design

Phase
Not applicable
Primary purpose
Prevention
Allocation
Randomized
Intervention model
Parallel assignment
Masking
Double (Investigator, Outcomes assessor)
Enrollment
81 participants (estimated)

Study arms

  • Experimental
    Weight Loss

    * Follow a reduced calorie diet daily for 12 months. * Attend monthly behavioral counseling/education

    Behavioral: Diet · Behavioral: Health Education

  • Active comparator
    General Health Education Control

    \- Attend monthly health education sessions about general health.

    Behavioral: Health Education

Interventions

  • BehavioralDiet

    A reduced calorie diet which uses frozen meals purchased at the store and focuses on increasing fruits and vegetables associated with brain health.

  • BehavioralHealth Education

    Monthly health education sessions delivered remotely.

05

What researchers measure

Primary outcomes

  1. Plasma Amyloid beta 42:40 ratio

    Examines the amount of amyloid beta in a person's brain, measured by a blood draw.

    Time frame: Baseline, 6, 12 months

  2. Neurofilament light

    Examines the amount of Neurofilament light in a person's brain, measured by a blood draw.

    Time frame: Baseline, 6, 12 months

  3. Weight

    Examines how much a person weights, measured by standing on a scale.

    Time frame: Baseline, 6, 12 months

Secondary outcomes

  1. Dietary Intake

    Examines what someone is eating, measured by writing down what a person eats over 3 days.

    Time frame: Baseline, 6, 12 months

  2. Skin carotenoid content

    Examines how many vegetables a person eats, measured by a finger scan using the Veggie Meter.

    Time frame: Baseline, 6, 12 months

  3. Plasma Phosphorylated Tau

    Examines the amount of Tau in a person's brain, collected by a blood draw.

    Time frame: Baseline, 6, 12 months

  4. Glial Fibrillary Acidic Protein

    Examines the amount of Glial Fibrillary Acidic Protein in a person's brain, collected by a blood draw.

    Time frame: Baseline, 6, 12 months

  5. Brian Volume

    Examines how much white and grey matter a person has in their brain, measured by MRI

    Time frame: Baseline, 12 months

  6. Brain antioxidants

    Examines the amount of GHS and vitamin C a person has in their brain. Measured by MRI

    Time frame: Baseline, 12 months

  7. The modified Cued Recall Test

    Measures cognitive function. Twelve items are presented for learning, 4 at a time, with each item accompanied by a unique category cue. The testing phase consists of 3 trials. Each trial begins with free recall of the test items; following free recall, a category cue is provided for those items not spontaneously recalled.

    Time frame: Baseline, 6, 12 months

  8. The Modified Cats and Dogs Task

    Measures executive function. The task measures the ability to inhibit a natural response (naming the pictures of a dog, as "dog") and to replace it with an incongruent one (naming the pictures of a dog as "cat").

    Time frame: Baseline, 6, 12 months

  9. Down Syndrome Mental Status Examination

    Provides an omnibus measure of neuropsychological functioning, assessing recall of personal information, orientation, immediate and delayed memory, language, visuospatial function and praxis.

    Time frame: Baseline, 6, 12 months

Other outcomes

  1. Height

    Examines how tall a person is, measured on a stadiometer

    Time frame: Baseline, 6, 12 months

  2. Waist circumference

    Examines the distance around the smallest part of a person's torso, measured with a measuring tape

    Time frame: Baseline, 6, 12 months

  3. Attendance at education sessions

    Examines how often individuals attendance the monthly education sessions. Obtained from interventionist records and expressed as the percentage of possible sessions attended.

    Time frame: Across 12 months

  4. Compliance with self-monitoring of diet

    Assessed as the percentage of days a person tracked what they ate across the study.

    Time frame: Across 12 months

  5. Physical Activity

    Examines Daily minutes of light, moderate, and vigorous physical activity as well as sedentary time using an ActiGraph tri-axial accelerometer worn on a wrist for 7 days.

    Time frame: Baseline, 6, 12 months

  6. Structured interviews

    A 20% random sample of participants and study partners from each intervention arm will complete a 30 minute interview to gather information that might be useful for improving the intervention.

    Time frame: 12 months

06

Study locations

1 of 1 sites recruiting
  • University of Kansas Medical Center
    Kansas City, Kansas 66160, United States
    • Lauren Ptomey, PhD · Contact
    Recruiting
07

References and documents

Publications

  • Ptomey LT, Donnelly JE, Burns J, Morris J, Hartley S, Martin LE, Choi IY, Lee P, Li Y, Hunt S, Sherman JR, Danon JC, Brucks MG, Koon L, Spaeth K, Sullivan DK. Brain outcomes with lifestyle change in adults with Down syndrome: Rationale and design for a 12-month randomized trial. Alzheimers Dement. 2025 Apr;21(4):e70219. doi: 10.1002/alz.70219. PubMed 40329624 ↗

Individual participant data

Plan to share: No

08

Registry details

Key details

Study ID
NCT05985486
Lead sponsor
University of Kansas Medical Center
Responsible party
Sponsor
First posted
Aug 14, 2023
Start date
Oct 22, 2024
Primary completion
Sep 30, 2027 (estimated)
Completion
Sep 30, 2027 (estimated)
Last update
Mar 11, 2026

Study contacts

Lauren Ptomey, PhD
Contact
lptomey@kumc.edu
913-588-7982
Jessica Danon
Contact
jdanon@kumc.edu
785-764-3574

Oversight

Data monitoring committee
Yes
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

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