Seeking Existing Down Syndrome Cohorts

Dear Colleague,

We are part of a working group seeking to compile a summary of existing cohorts and datasets related to Down syndrome research.

This effort grew out of an NIH-sponsored workshop held in September 2019 on “Planning a Virtual Down Syndrome Cohort Across the Lifespan”. This workshop is part of the larger NIH INCLUDE Project (

Results of the survey will be compiled and shared publicly with the intention of highlighting gap areas, helping guide prospective data collection (cohort building), and facilitating sharing and linkages across datasets to foster new collaborations.

Access the survey at this link:

On behalf of this group, we invite you to complete this survey by July 10, 2020. It should take 10 to 15 minutes to complete.

Please let us know if you have any questions about the purpose or use of the survey and survey results.

Please contact Mike Hartnett ( if you have any questions about accessing or completing the survey.

Thank you for your time and contribution to this important effort.

Best regards, 

Philip and Amy


Philip J. Lupo, PhD, MPH

Associate Professor of Pediatrics

Baylor College of Medicine

Director, Epidemiology Program

Texas Children’s Cancer and Hematology Centers

One Baylor Plaza | MS: BCM622 | Houston, TX 77030

713-798-2960 tel | 713-798-8711 fax | email


Amy Brower, PhD

Co-Principal Investigator - Newborn Screening Translational Research Network

American College of Medical Genetics and Genomics (ACMG)

7101 Wisconsin Avenue

Suite 1101

Bethesda, MD  20814

Cell: 712-577-0666

Fax: 301-718-9604

Medical Genetics:  Translating Genes into Health


Recent Stories
BDRP New Member Drive Update!

Practical Reproductive and Developmental Toxicology Virtual Course - Available On Demand for Limited Time!

Webinar: Dermatotoxicology: Occupational and Environmental Aspects, September 21 at 11 am ET