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 (https://www.nih.gov/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: http://is.gd/DownCohort
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 (email@example.com) if you have any questions about accessing or completing the survey.
Thank you for your time and contribution to this important effort.
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
713-798-2960 tel | 713-798-8711 fax | Philip.Lupo@bcm.edu email
Amy Brower, PhD
Co-Principal Investigator - Newborn Screening Translational Research Network
American College of Medical Genetics and Genomics (ACMG)
7101 Wisconsin Avenue
Bethesda, MD 20814
Medical Genetics: Translating Genes into Health