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Alzheimer Biomarkers Consortium - Down Syndrome (ABC-DS)
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Sample details

The ABC-DS study follows adults with Down syndrome (DS) to identify early biomarkers of Alzheimer's disease (AD). Since the study began in 2015, over 500 participants have been recruited, and recruitment is ongoing. Participants are individuals with DS aged 25 years and older, who have been recruited from the United States of America (California, New York, Massachusetts, Kentucky, Missouri, Wisconsin and Pennsylvania) and the United Kingdom (Cambridge). The study has also recruited a small number of healthy non-DS sibling participants as controls. Participants are followed up at approximately 16-month intervals for a total of 3 to 4 cycles.

Study design
Cohort - clinical

Number of participants at first data collection

519 (participants with DS)

~40 (sibling controls)

Recruitment is ongoing

Age at first data collection

≥ 25 years (participants with DS)

≥ 25 years (sibling controls)

Participant year of birth

Varied (participants with DS)

Varied (sibling controls)

Participant sex
All

Representative sample at baseline?
No

Sample features

Adults
Control participants
People with Down syndrome
Siblings
Dataset details
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Countries

England, United Kingdom of Great Britain and Northern Ireland, United States of America

Year of first data collection

2015

Primary Institutions

University of California, Irvine (UCI)

University of Pittsburgh

University of Wisconsin-Madison

Links

abc-ds.org/

nia.nih.gov/research/abc-ds

Profile paper DOI

doi.org/10.1002/dad2.12065

Funders

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE (INCLUDE)

National Institute on Aging (NIA)

National Institutes of Health (NIH)

Ongoing?
Yes

Data types collected

neuroImagingData
mentalHealthData
Quantitative data collection
  • Computer, paper or task testing (e.g. cognitive testing, theory of mind doll task, attention computer tasks)
  • Interview – face-to-face
  • Physical or biological assessment (e.g. blood, saliva, gait, grip strength, anthropometry)
  • Self-completed questionnaire – paper or computer assisted
Qualitative data collection
  • None
Neuroimaging data collection
  • Magnetic Resonance Imaging (MRI)
  • Positron Emission Tomography (PET)
Linked or secondary data
  • None
Features

Engagement

  • Patients, service users, lived experience involvement
  • Community engagement
  • Participant or community advisory groups
  • Keywords

    Alzheimer's disease (AD)
    Biological samples/biospecimens
    Biomarkers
    Cognition
    Dementia
    Down Syndrome (DS)
    Functional assessments
    Genetics
    Life events
    Medical history
    Memory
    Neuropsychiatry

    Consortia and dataset groups

    INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE (INCLUDE) Project
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