After the caregiver of your patient completes the online intake for DSC2U, they will instantly receive two personalized documents: one for themselves and one to share with you, 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 the care of persons with Down syndrome.

You, the primary care provider, will not directly get a copy of this plan unless the family provides it to you. We encourage families to share the Primary Care Provider Plan with their health care provider in advance of the next routine appointment or well visit. The Plan is available for downloading to print and save as a pdf file. As such, families have the option of hand delivering it to you, mailing it, or sending it through a secure email or patient portal. We also recommend that they bring a hard copy with them to the next primary care provider appointment.

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.

Yes, you are certainly able to encourage caregivers to complete DSC2U! Please direct them to dsc2u.org, or you are also welcome to distribute this handout in your clinic.

These plans were personalized and auto-generated (by a computer) based on the information the caregivers provided and questions they answered on DSC2U. The Primary Care Provider Plan will contain an explanation on why each recommendation/resource was generated, highlighting information the caregivers provided in the intake form.

These checklists are not an attempt to practice medicine or provide specific clinical advice. Instead, they are intended to provide useful information for reference and educational purposes only. The content of these checklists are also not meant to be complete or exhaustive or a substitute for your professional medical advice, diagnosis, or treatment. You are welcome to use (or not) any information that you find helpful. You, the primary care provider, are responsible for exercising independent judgment about the contents of these checklists and for recommending and implementing any care or other course of action for your patient.

We encourage you to have a discussion with your patient’s family about this and to follow any processes established by your medical system.

Links to the online resources and information provided through DSC2U is available, for free, at https://www.dsc2u.org/primarycare These include patient handouts, videos, and suggested web pages. Please feel free to access and use these resources as you find them to be helpful.

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.

Some local Down syndrome organizations have chosen to underwrite a portion of the cost of DSC2U by purchasing “discount codes”. Please check with your local Down syndrome organization to see if this is an option for you.

Health information is entered through the secure DSC2U website and is saved in secure servers located behind the firewall of our healthcare system, Partners Healthcare. On completion, the Caregiver Checklist and PCP Plan are accessible only through an e-mail link, and then, a private code selected by the family member.

DSC2U is available in English and Spanish.

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.

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.

If you have any technical questions, please e-mail our team at dsc2u@mgh.harvard.edu.

If you have any medical questions beyond those addressed in your Caregiver Checklist, Massachusetts General Hospital does offer a remote second opinion service, at additional costs.

Beyond these options, we are not able to offer any medical advice or provide medical information beyond that which was included on the Caregiver Checklist. We are also not able to provide any direct consultation, referrals, or access to physicians at Massachusetts General Hospital.