Clinicians at Massachusetts General Hospital’s (MGH) Down Syndrome Program have launched the Down Syndrome Clinic To You (DSC2U), an online portal designed to connect families and primary care physicians with personalized health and wellness information for their loved one or patient with Down syndrome.
Users will be asked to identify current symptoms in their loved one with Down syndrome along with any past medical or behavioral diagnoses and any recent blood work or diagnostic testing. They are additionally offered an optional set of questions about nutrition, education, therapies, life skills, and community resources.
Responses will be electronically analyzed by an evidence-based set of rules, and the output will contain customized suggestions that are designed to help individuals with Down syndrome receive health care tailored to their own specific needs.
“Geography and socioeconomics should never prevent someone from accessing the best and most timely medical information for a loved one with Down syndrome,” says Brian Skotko, MD, MPP, director of the Down Syndrome Program and Emma Campbell Endowed Chair on Down Syndrome at Massachusetts General Hospital.
“Rather than asking families around the world to come to Boston, we are instead bringing the most accurate and up-to-date information to families in their home settings.”
Down syndrome is the most common genetic condition in the United States, but only 5 percent of those 212,000 families have access to a specialty program that provides comprehensive care like the program at Mass General Hospital.
On average, one in five U.S. families must travel more than two hours to receive care at the nearest Down syndrome specialty clinic. DSC2U brings MGH’s expertise in medicine, nutrition, education, therapies, life skills, and community resources to individuals with Down syndrome.
DSC2U also democratizes the expert-level care. Without having to travel to Boston, parents can receive curated, up-to-date information in their homes from the Mass General clinical team.
DSC2U is entirely automated and neither caregivers nor primary care providers will have the opportunity to discuss clinical or personal information with physicians at MGH.
DSC2U is also a first-of-its-kind technology within the health care arena. Current direct-to-consumer telemedicine platforms are significantly restricted by state licensing regulations—that is, many clinicians are not able to provide telemedicine consults to new patients living in other states. Current direct-to-consumer telemedicine platforms are also not a scalable solution for rare conditions such as Down syndrome.
The few specialists available for in-person consultations do not have the combined capacity to provide direct-to-consumer virtual face time. DSC2U transcends these limitations by providing direct-to-consumer health care information, which is customized and automated, in real time.
To this extent, this platform has the potential to be a blueprint for many other medical conditions, which have health care guidelines, few available in-person specialists, and expectations for management by primary care physicians.
DSC2U was created with the help of a generous grant from the Patient-Centered Outcomes Research Institute (PCORI), a federally-funded program established to help patients and their caregivers make better informed decisions about health care. The program was created in collaboration with the MGH Lab of Computer Science, and its development was led by Jeanhee Chung, MD, MS.
“We consistently hear from families about the hardships they encounter when trying to get the best health care for their loved one with Down syndrome. Their children and adults are missing out on critical screenings and resources that significantly impact their health and quality of life because they can’t afford the travel or out of pocket costs to access one of the specialty clinics in the U.S.,” said Hampus Hillerstrom, president and chief executive officer of LuMind IDSC Foundation.
LuMind is the founding philanthropic sponsor of DSC2U that will help sustain its launch. “DSC2U is an affordable solution that helps us address that disparity and help increase their access to this specialty medical care.”
DSC2U is available in English and Spanish at www.dsc2u.org for $49 per use. MGH is working with several insurance providers about future coverage options. Discount codes are available to Down syndrome non-profit organizations through the LuMind IDSC Foundation. Families should contact their local Down syndrome organization to see what may be available.
About Massachusetts General Hospital
Massachusetts General Hospital, founded in 1811, is the original and largest teaching hospital of Harvard Medical School. The Mass General Research Institute conducts the largest hospital-based research program in the nation, with annual research operations of more than $1 billion and comprises more than 9,500 researchers working across more than 30 institutes, centers and departments. In August 2020, Mass General was named #6 in the U.S. News & World Report list of "America’s Best Hospitals.”
About the LuMind IDSC Foundation
The LuMind IDSC Foundation (LuMind IDSC) is an international nonprofit organization that accelerates research to increase availability of therapeutic, diagnostic, and medical care options for everyone with Down syndrome. The Foundation empowers the largest online community of individuals with Down syndrome and their families with education, resources, and support. Since 2004, LuMind IDSC raised a total of $85M in funding for Down syndrome research to prevent Alzheimer’s onset, improve cognition, develop gene therapies, and advance understanding. Visit www.LuMindIDSC.org to learn more or get involved.