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DOWN SYNDROME CLINIC TO YOU (DSC2U)

DSC2U is a personalized care plan for people with Down syndrome who don't have access to specialized healthcare

LuMind IDSC is proud to be the founding philanthropic supporter of DSC2U.

Very few families who have loved ones with Down syndrome live in an area where they can visit a Down syndrome specialty program like the one at Massachusetts General Hospital/Harvard Medical School. We know that most hardworking primary care physicians have only one or two patients with Down syndrome in their practice, so it is both unreasonable and impractical to expect them to stay current on all of the healthcare recommendations for this unique population.

We supported the creation of the MGH Down Syndrome Program’s Down Syndrome Clinic to You (DSC2U) to bring the best of health and wellness information about Down syndrome to caregivers and primary care physicians around the globe. We believe that location and personal finances should never prevent someone from accessing the best and most timely medical information for a loved one with Down syndrome.

The entire DSC2U service is now available in Spanish! ¡Todo el servicio DSC2U ya está disponible en español!

With DSC2U, caregivers complete an online intake form, where they can identify current health concerns about their child with Down syndrome. The responses will generate two personalized documents: a plan for caregivers and another one to bring to their next visit with the child’s primary care provider. Here’s how it works:

DSC2U

Frequently Asked Questions

What is DSC2U?

Clinical expertise for people with Down syndrome is now accessible to everyone, via DSC2U. This online toolkit provides customized, expert-driven information for people with Down syndrome from age 1 through adulthood. When caregivers access DSC2U online, they are invited to share concerns, symptoms, medical issues, and behavioral diagnoses of their loved one with Down syndrome. Those data points are analyzed, using state-of-the-art guidelines designed by nationally recognized Down syndrome experts. Immediately upon completion of the form, caregivers receive two personalized documents: one for themselves and one to share with their primary healthcare provider. Both documents contain detailed, customized suggestions, follow-up questions, and conversation prompts that are designed to optimize time with a primary care provider and offer caregivers the vocabulary and tools they need to advocate for their loved one.

Who created DSC2U?

DSC2U was created by Dr. Brian Skotko, MD, MPP, and the clinical and research teams from the Down Syndrome Program and Lab of Computer Science at Massachusetts General Hospital, a not-for-profit academic hospital affiliated with Harvard Medical School. The team worked in close consultation with key stakeholders, including parents and caregivers of people with Down syndrome, representatives of Down syndrome advocacy organizations, primary care physicians, and national medical experts.

Who can benefit from DSC2U?

DSC2U provides customized information for people with Down syndrome from age 1 through adulthood/senior years.

When caregivers access DSC2U online, you will be asked to identify current symptoms in your loved one with Down syndrome along with any past medical or behavioral diagnoses and any recent blood work or diagnostic testing. DSC2U also contains optional questions about nutrition, education, therapies, life skills, and community resources.

Your responses will be analyzed by a computer, based on state-of-the-art guidelines designed by national Down syndrome experts. The caregiver will instantly receive two personalized documents: one for yourself and one to share with your primary healthcare provider. These documents contain customized suggestions that are designed to help your loved one get healthcare tailored to your own specific needs.

Why is DSC2U so valuable to families?

We tested DSC2U in a national randomized controlled trial with 230 families from around the U.S. who did not have access to a Down syndrome specialty clinic. DSC2U is effective.

People with Down syndrome whose caregivers used DSC2U had a 1.6-fold increase in adherence to recommended guidelines. About 97% of caregivers found the output of DSC2U easy to understand, and 100% of caregivers would recommend DSC2U to other families.

About 97% of primary care providers agreed with the customized recommendations of DSC2U, and 100% of primary care providers were interested in the information.

We are confident that DSC2U helps bring the best and most timely medical information to your loved ones with Down syndrome.

Sample Caregiver Checklist and Primary Care Provider Plan

To learn more about DSC2U, click here.