Research on Down syndrome has long lagged behind other conditions, but a new effort is underway to make it easier to study the chromosomal disorder.

For the first time, a biobank is being established specifically to collect and manage blood samples from people with Down syndrome.

Housed at Nationwide Children’s Hospital in Columbus, Ohio, the biobank will offer researchers a centralized source to study Down syndrome and other conditions common in those with the developmental disorder including congenital heart disease, childhood leukemia and Alzheimer’s disease, organizers said.

Advertisement - Continue Reading Below

“Biobanks have been around since the 1990s,” said Lito Ramirez, founder of DownSyndrome Achieves, which is working with Nationwide Children’s to create the new resource. “Nearly every research category except Down syndrome has had a centralized biobank. Now, we are able to support researchers by providing a national, centralized repository of samples donated by people with Down syndrome.”

Initially, organizers said the biobank will store blood samples collected at Nationwide Children’s, but plans are in the works to eventually source from other facilities and accept various tissue types.

Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital and a leading researcher in the field, said the biobank is much needed.

“A biobank provides researchers with the potential to unlock some of the mysteries associated with Down syndrome,” Skotko said. “Currently, researchers do not have readily available and curated blood and tissue samples to advance our understandings of the conditions that co-occur with Down syndrome. I am excited that the Down syndrome community will have this national resource, which is long overdue.”

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.