Learn about the new program designed to improve the health care journey for patients with down syndrome

In collaboration with our partners at Mass General Brigham, our members now have free access to the Down Syndrome Clinic to You (DSC2U), an online service developed by Dr. Brian Skotko, MD, MPP, and the teams from the Down Syndrome Program and Lab of Computer Science at Massachusetts General Hospital. DSC2U provides patients with a personalized health and wellness plan that can be shared with their primary care provider to improve their overall healthcare journey. Keep reading to learn more about the clinic and Dr. Skotko’s mission to democratize healthcare for people with Down syndrome.

What motivated you to create the DSC2U?  

More than 95% of families in the U.S. who have loved ones with Down syndrome do not live near a Down syndrome specialty clinic like the one we have at Massachusetts General Hospital.  So, we created DSC2U to bring the latest health and wellness information about Down syndrome to all families. 

What is the ultimate goal of the DSC2U?

The ultimate goal of DSC2U is to democratize healthcare for people with Down syndrome. Geography and financial status should no longer get in the way of people with Down syndrome and their families accessing the best health and wellness information. DSC2U brings health information directly to families so that they do not need to search for it.

What does DSC2U mean for the Down syndrome community?

DSC2U is a first-of-its-kind online platform for the Down syndrome community. Even when working with their primary care physicians, less than 10% of people with Down syndrome are up-to-date on the recommended healthcare screens. DSC2U closes this gap by providing knowledge and resources to caregivers and primary care providers. We are proud of our collaboration with AllWays Health Partners and My Care Family, the first two health plans to offer their members unlimited access to DSC2U. Together, we are bringing high-cost specialty care to cost-efficient primary care settings.

What services are offered at the DSC2U?

We see DSC2U as a way for families to get up-to-date, personalized health and wellness information for their loved ones with Down syndrome. DSC2U provides customized information for people with Down syndrome from age 1 through adulthood/senior years. When caregivers access DSC2U online, they identify current symptoms, any past medical or behavioral diagnoses, and any recent blood work or diagnostic testing on their loved one with Down syndrome. DSC2U also contains optional questions about nutrition, education, therapies, life skills, and community resources. Then, a computer will analyze their responses based on state-of-the-art guidelines designed by national Down syndrome experts.

The caregiver will instantly receive two personalized documents: one for themselves and one to share with their primary healthcare provider. These documents contain customized suggestions designed to help their loved ones get healthcare tailored to their own specific needs. The documents are based on the caregiver’s answers to the DSC2U survey and draw on national guidelines for the care of persons with Down syndrome.

To learn more about the DSC2U, read our press release, and visit their website, Facebook, and Twitter.

You can also follow Dr. Brian Skotko, MD, MPP on Twitter and Facebook or watch his interview on Boston 25 News