Down syndrome is a complicated disease, but researching it just got a little easier.
Thanks to the National Institutes of Health, research professionals can access a new sub-site of “DS-Connect: The Down Syndrome Registry,” which will allow them to find data and patients for studies.
Melissa Parisi, chief of the intellectual and developmental disabilities branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development, said the new portal for professionals — launched on Tuesday — makes research easier.
“Pretty much anyone can set up an account and access that de-identified information. So it protects the participants in the registry but still allows them to look at the information,” Parisi said. “They can use this information to learn more about Down syndrome but also to design clinical studies or therapeutic trials and actually work with us to contact the relevant participants who might be interested in participating in a particular study.”
Before the new addition, the registry was used primarily for families and patients with Down syndrome. It has multiple tools, such as growth tracking and physician matching to make treatment for those with Down syndrome easier.
Sujata Bardhan, DS-Connect registry coordinator at the institute, said the registry is a great resource for families.
“It’s a powerful tool because it’s a two-way street. It’s not just a place where we are collecting information but we’re giving back information,” Bardhan said.
Parisi said adding the portal makes the registry even more useful — pooling together information from people with Down syndrome and connecting them with researchers, all in the name of improving treatment for individuals with the disorder.
Lindsay Tipton, program director at Triangle Down Syndrome Network, said she often directs people with family members who have Down syndrome to the registry.