The Alzheimer's Biomarker Consortium-Down Syndrome (ABC-DS): A 10-year report

Benjamin L Handen¹, Mark Mapstone², Sigan Hartley³, Howard Andrews⁴, Brad Christian³, Joseph H Lee⁵, Dana Tudorascu¹, Christy Hom⁶, Beau M Ances⁷, Shahid Zaman⁸, Sharon Krinsky-McHale⁹, Adam M Brickman⁵, H Diana Rosas¹⁰, Annie Cohen¹, Melissa Petersen¹¹, Sid O'Bryant¹¹, Jordan P Harp¹², Frederick Schmitt¹², Lauren Ptomey¹³, Jeffrey Burns¹³, Ira T Lott¹⁴, Florence Lai¹⁵, Wayne Silverman¹⁴, Charles Laymon¹, Elizabeth Head¹⁶; Alzheimer's Biomarker Consortium – Down Syndrome (ABC‐DS)

Affiliations

¹ University of Pittsburgh, Department of Psychiatry, Pittsburgh, Pennsylvania, USA.
² University of California, Irvine, Department of Neurology, Irvine, California, USA.
³ University of Wisconsin Madison, Waisman Center, Madison, Wisconsin, USA.
⁴ Columbia University Irving Medical Center, Taub Institute for Research on Alzheimer's Disease and the Aging Brain, New York, New York, USA.
⁵ Columbia University, Vagelos College of Physicians and Surgeons, Taub Institute for Research on Alzheimer's Disease and the Aging Brain, Department of Neurology, New York, New York, USA.
⁶ Irvine, University School of Medicine, of California, Department of Psychiatry and Human Behavior, Orange, California, USA.
⁷ Washington University School of Medicine in St. Louis, Box 8111, St. Louis, Missouri, USA.
⁸ University of Cambridge, School of Clinical Medicine, Department of Psychiatry, Forvie Site, Robinson Way, Cambridge, UK.
⁹ NYS Institute for Basic Research in Developmental Disabilities, Department of Psychology, Staten Island, New York, USA.
¹⁰ Massachusetts General Hospital, Departments of Neurology and Radiology, Harvard Medical School, Charlestown, Massachusetts, USA.
¹¹ University of North Texas Health Science Center, Department of Family Medicine, Fort Worth, Texas, USA.
¹² University of Kentucky College of Medicine, Kentucky Neuroscience Institute & Sanders-Brown Center on Aging, Lexington, Kentucky, USA.
¹³ University of Kansas Medical Center, Kansas city, Kansas, USA.
¹⁴ University of California, Irvine, School of Medicine, Department of Pediatrics, Orange, California, USA.
¹⁵ Massachusetts General Hospital, Department of Neurology, Harvard Medical School, Charlestown, Massachusetts, USA.
¹⁶ University of California, Irvine, Department of Pathology, 1261 Gillespie Neuroscience Facility, Irvine, California, USA.

PMID: 40371686
PMCID: PMC12079517
DOI: 10.1002/alz.70294

The Alzheimer's Biomarker Consortium-Down Syndrome (ABC-DS): A 10-year report

Benjamin L Handen et al. Alzheimers Dement. 2025 May.

. 2025 May;21(5):e70294.

doi: 10.1002/alz.70294.

Authors

Affiliations

¹ University of Pittsburgh, Department of Psychiatry, Pittsburgh, Pennsylvania, USA.
² University of California, Irvine, Department of Neurology, Irvine, California, USA.
³ University of Wisconsin Madison, Waisman Center, Madison, Wisconsin, USA.
⁴ Columbia University Irving Medical Center, Taub Institute for Research on Alzheimer's Disease and the Aging Brain, New York, New York, USA.
⁵ Columbia University, Vagelos College of Physicians and Surgeons, Taub Institute for Research on Alzheimer's Disease and the Aging Brain, Department of Neurology, New York, New York, USA.
⁶ Irvine, University School of Medicine, of California, Department of Psychiatry and Human Behavior, Orange, California, USA.
⁷ Washington University School of Medicine in St. Louis, Box 8111, St. Louis, Missouri, USA.
⁸ University of Cambridge, School of Clinical Medicine, Department of Psychiatry, Forvie Site, Robinson Way, Cambridge, UK.
⁹ NYS Institute for Basic Research in Developmental Disabilities, Department of Psychology, Staten Island, New York, USA.
¹⁰ Massachusetts General Hospital, Departments of Neurology and Radiology, Harvard Medical School, Charlestown, Massachusetts, USA.
¹¹ University of North Texas Health Science Center, Department of Family Medicine, Fort Worth, Texas, USA.
¹² University of Kentucky College of Medicine, Kentucky Neuroscience Institute & Sanders-Brown Center on Aging, Lexington, Kentucky, USA.
¹³ University of Kansas Medical Center, Kansas city, Kansas, USA.
¹⁴ University of California, Irvine, School of Medicine, Department of Pediatrics, Orange, California, USA.
¹⁵ Massachusetts General Hospital, Department of Neurology, Harvard Medical School, Charlestown, Massachusetts, USA.
¹⁶ University of California, Irvine, Department of Pathology, 1261 Gillespie Neuroscience Facility, Irvine, California, USA.

PMID: 40371686
PMCID: PMC12079517
DOI: 10.1002/alz.70294

Abstract

Introduction: Virtually all adults with Down syndrome (DS) will accumulate the neuropathologies associated with Alzheimer's disease (AD) by age 40, with the majority having a clinical dementia diagnosis by their middle 50s.

Methods: This paper complements a 2020 publication describing the Alzheimer's Biomarker Consortium-Down Syndrome (ABC-DS) methodology by highlighting protocol changes since initial funding in 2015. It describes available clinical, neuropsychological, neuroimaging, and biofluid data and bio-specimen repository. Ten years of accomplishments are summarized.

Results: Over 500 adults with DS and 59 sibling controls have been enrolled since 2015 with nearly 800 follow-up visits. More than 900 magnetic resonance imaging (MRI), 800 amyloid positron emission tomography (PET), and 600 tau PET scans have been conducted; multiple omics data have been generated using over 1100 blood and 100 cerebrospinal fluid (CSF) samples.

Discussion: ABC-DS is the largest U.S.-based, multi-site (including the United Kingdom and Puerto Rico), longitudinal biomarker initiative to target adults with DS at risk for AD.

Highlights: The Alzheimer's Biomarker Consortium-Down Syndrome (ABC-DS) is entering its 10th year. Over 500 adults with Down syndrome (DS) and 59 sibling controls have been enrolled. More than 900 magnetic resonance imaging (MRI), 800 amyloid positron emission tomography (PET), and 600 tau PET scans have been conducted. Multiple omics data have been generated using over 1100 blood and 100 cerebrospinal fluid (CSF) samples. It is positioned to continue to make substantial contributions to the DS field.

Keywords: ABC‐DS; Alzheimer's disease; Down syndrome; dementia.

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Conflict of interest statement

The authors declare no conflicts of interest. Author disclosures are available in the Supporting information.

Figures

**FIGURE 1**
Overview of ABC‐DS procedures at each scheduled study visit. ABC‐DS, Alzheimer's Biomarker Consortium–Down Syndrome.

See this image and copyright information in PMC

References

1. Zigman WB, Schupf N, Sersen E, Silverman W. Prevalence of dementia in adults with and without Down syndrome. Am J Ment Retard. 1996;100:403‐412. - PubMed
1. Visser FE, Aldenkamp AP, van Huffelen AC, Kuilman M, Overweg J, van Wijk J. Prospective study of the prevalence of Alzheimer‐type dementia in institutionalized individuals with Down syndrome. Am J Ment Retard. 1997;101:400‐412. - PubMed
1. Wisniewski K, Wisniewski H, Wen G. Occurrence of neuropathological changes and dementia of Alzheimer's disease in Down's syndrome. Ann Neurol. 1985;17:278‐282. - PubMed
1. Lai F, Williams RS. A prospective study of Alzheimer disease in Down syndrome. Arch Neurol. 1989;46:849‐853. - PubMed
1. Devenny DA, Silverman WP, Hill AL, Jenkins E, Sersen EA, Wisniewski KE. Normal ageing in adults with Down's syndrome: a longitudinal study. J Intellect Disabil Res. 1996;40:208‐221. - PubMed

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The Alzheimer's Biomarker Consortium-Down Syndrome (ABC-DS): A 10-year report

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The Alzheimer's Biomarker Consortium-Down Syndrome (ABC-DS): A 10-year report

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Conflict of interest statement

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