We see DSC2U as a way for families to get up-to-date, personalized health and wellness information for their loved one with Down syndrome. When caregivers access DSC2U online, they 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. DSC2U also contains optional sets of questions about nutrition, education, therapies, life skills, and community resources. Their 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 themselves and one to share with their primary healthcare provider. These documents contain customized suggestions that are designed to help their loved one 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 care of persons with Down syndrome.

DSC2U does not offer direct access to physicians at Massachusetts General Hospital, nor does it offer caregivers access to MGH physicians by e-mail, text, phone, or videoconference. DSC2U offers instead the most current recommendations and resources to caregivers through personalized online documents.

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. You can read the full research paper, ​this summary, and/or listen to a podcast summarizing the results.

DSC2U was created by Dr. Brian Skotko, MD, MPP, and the clinical and research teams from the Down Syndrome Program 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.

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 healthcare. This funding ended in July 2019. DSC2U has never accepted any funding from pharmaceutical companies or commercial entities.

Now that the PCORI grant has ended, DSC2U continues to be maintained and updated by the same team at Massachusetts General Hospital but must pay its own way. It is solely maintained by philanthropic donations and user fees.

LuMind IDSC Foundation is the founding philanthropic supporter and will collaborate with Massachusetts General Hospital to bring DSC2U to more than 200,000 families who do not have access to a specialty Down syndrome clinic like ours.

Donations and user fees are received and processed by Massachusetts General Hospital, and are used to cover the expenses associated with maintaining and improving this resource. These expenses include such things as ongoing review of new research results, administrative costs, and computer software updates.

Some insurance companies do cover the fee for families; a listing of such insurers can be found here.

Yes. We offer different pricing plans to suit different needs. These fees will cover the cost of expenses associated with maintaining and improving this resource. Some insurance companies do cover these fees for families; a listing of such insurers can be found here.

Because we realize that this cost may be prohibitive for some families, we are asking local Down syndrome organizations to underwrite a portion of this cost by purchasing “discount codes” for DSC2U. These codes may be shared with families who might not otherwise be able to afford DSC2U, or in any way that an organization sees fit.

Here are four steps that you can take right now to ensure that your families have access to this important information:

1. Spread the word on social media. To make this easy and simple, we have drafted sample posts for Facebook, Twitter, Pinterest, and Instagram, including photos that can be used. We have also created this video on YouTube, which you can share.
2. Include information about DSC2U in your next e-newsletter. To make this easy for you, we have drafted a sample text.
3. Distribute copies of our DSC2U flyer at any of your in-person membership events.
4. Offset the costs for families in your area. You know your families best. Are there families in need who would not otherwise be able to access DSC2U? Or would you like to help make DSC2U available to all of your families? We ask that organizations consider purchasing discount codes, as described below, to help bring valuable health and wellness information to families.