A randomized controlled trial of an online health tool about Down syndrome
A multidisciplinary team of clinicians, caregivers, and software engineers recently built Down Syndrome Clinic to You (DSC2U). This online portal provides automated and customized health and wellness information for caregivers and primary care providers who are taking care of someone with Down syndrome.
The team recently tested the efficacy of DSC2U, along with surveying caregivers and primary care providers about their experience using this platform. Approximately 230 families from around the U.S. participated in the randomized controlled trial, where half of the families were randomly given access to DSC2U, whereas the other families continued with the usual care recommended by their loved one’s primary care provider. The results, published in Genetics in Medicine, show that people with Down syndrome had a 1.6-fold increase in adherence to medical guidelines when their caregivers used DSC2U. Approximately 97% of parents found the customized plans easy to understand, and 100% of the primary care providers were interested in the information in these plans. This work was partially supported through a Patient-Centered Outcomes Research Institute (PCORI) Research Award. DS-Connect® (The Down Syndrome Registry) assisted with the study recruitment.
DSC2U is now available to all families around the globe in both English and Spanish. Many Down syndrome organizations are providing discounts to their members, including LuMind IDSC Down Syndrome Foundation, who is a founding philanthropic sponsor. The mission of DSC2U is to democratize health and wellness information about Down syndrome: customized recommendations for all people with Down syndrome are now just a click away.