Down Syndrome Biobank Consortium: A perspective

Author:

Aldecoa Iban12,Barroeta Isabel3,Carroll Steven L.4,Fortea Juan3,Gilmore Anah5,Ginsberg Stephen D.67,Guzman Samuel J.8,Hamlett Eric D.4,Head Elizabeth9,Perez Sylvia E.10,Potter Huntington11,Molina‐Porcel Laura112,Raha‐Chowdhury Ruma13,Wisniewski Thomas14,Yong William H.9,Zaman Shahid13,Ghosh Sujay15,Mufson Elliott J.10,Granholm Ann‐Charlotte5ORCID

Affiliation:

1. Pathology Department Hospital Clinic de Barcelona‐University of Barcelona Barcelona Spain

2. Neurological Tissue Bank of the Biobank Hospital Clinic de Barcelona‐FCRB/IDIBAPS Barcelona Spain

3. Neurology Department Hospital de la Santa Creu i Sant Pau, Neurology Barcelona Spain

4. Department of Pathology & Laboratory Medicine Medical University of South Carolina Charleston South Carolina USA

5. University of Colorado Denver Anschutz Medical Campus, Neurosurgery Aurora Colorado USA

6. Center for Dementia Research, Nathan Kline Institute Orangeburg New York USA

7. Departments of Psychiatry Neuroscience & Physiology, and the NYU Neuroscience Institute, New York University Grossman School of Medicine New York New York USA

8. Department of Pathology University of Colorado Anschutz Medical Campus Aurora Colorado USA

9. Department of Pathology and Laboratory Medicine University of California Irvine, UCI School of Medicine D440 Medical Sciences I Irvine California USA

10. Barrow Neurological Institute Translational Neurosciences and Neurology Phoenix Arizona USA

11. University of Colorado Denver Anschutz Medical Campus, Neurology Aurora Colorado USA

12. Alzheimer's Disease and Other Cognitive Disorders Unit Neurology Service, Hospital Clínic, IDIBAPS, University of Barcelona Barcelona Spain

13. Department of Psychiatry Cambridge Intellectual & Developmental Disabilities Research Group University of Cambridge Cambridge UK

14. Center for Cognitive Neurology, Departments of Neurology, Pathology and Psychiatry New York University Grossman School of Medicine New York New York USA

15. Department of Zoology Cytogenetics and Genomics Research Unit Kolkata India

Abstract

AbstractIndividuals with Down syndrome (DS) have a partial or complete trisomy of chromosome 21, resulting in an increased risk for early‐onset Alzheimer's disease (AD)‐type dementia by early midlife. Despite ongoing clinical trials to treat late‐onset AD, individuals with DS are often excluded. Furthermore, timely diagnosis or management is often not available. Of the genetic causes of AD, people with DS represent the largest cohort. Currently, there is a knowledge gap regarding the underlying neurobiological mechanisms of DS‐related AD (DS‐AD), partly due to limited access to well‐characterized brain tissue and biomaterials for research. To address this challenge, we created an international consortium of brain banks focused on collecting and disseminating brain tissue from persons with DS throughout their lifespan, named the Down Syndrome Biobank Consortium (DSBC) consisting of 11 biobanking sites located in Europe, India, and the USA. This perspective describes the DSBC harmonized protocols and tissue dissemination goals.

Funder

National Institutes of Health

Barrow Neurological Foundation

BrightFocus Foundation

Publisher

Wiley

Subject

Psychiatry and Mental health,Cellular and Molecular Neuroscience,Geriatrics and Gerontology,Neurology (clinical),Developmental Neuroscience,Health Policy,Epidemiology

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