A first-of-its-kind effort is underway to collect biological samples from people with Down syndrome in a bid to improve care and outcomes for those with chromosomal disorder.

Cincinnati Children’s Hospital Medical Center and the research advocacy group DownSyndrome Achieves said they are launching the DSA Biobank to provide a central repository for biological specimens from individuals with Down syndrome and their immediate families.

The biobank is the first in the Down syndrome field to “catalog, store and openly share biosamples and associated health data for study,” according to those behind the project, which has been years in the making.

Blood, saliva and tissue samples can be stored with the biobank that’s being housed at a secure facility through the Discover Together Biobank at Cincinnati Children’s. The specimens will be available for use in basic, translational and clinical research.

Individuals with Down syndrome from Lee Specialty Clinic in Louisville, Ky. were enrolled during a pilot phase and other Down syndrome specialty clinics are expected to participate beginning later this year. The biobank has already started to approve research projects to receive samples.

Lito Ramirez, CEO of DownSyndrome Achieves, said the biobank “provides researchers with the potential to unlock some of the mysteries associated with Down syndrome.”

“Currently, researchers do not have readily available blood and other samples to advance our understanding of the conditions that co-occur with Down syndrome,” Ramirez said. “I’m excited the Down syndrome community will have this national resource, which is long overdue.”

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