A personalized care plan

We’re here to help you. We know it may not be easy to get expert medical care for your loved one with Down syndrome.

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 created 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.

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"I am Hispanic, and my husband is Black American. Throughout the years we have struggled with health care coverage, and for a few years, we didn’t have medical insurance. When we had insurance, it wasn’t the best coverage we could have so we had limited access to good doctors. DSC2U will address the disparities we face on a daily basis."

Sandra Baker, mother



"In an era when the offer of prenatal testing is universal and termination of pregnancies involving Down syndrome is commonplace, families of people with Down syndrome often say they worry that the medical establishment has passed them by. They feel marginalized, unseen, and unserved. Families of people with Down syndrome don't want admiration, and they don't want pity. They feel a critical and urgent need for adequate health care for their loved ones, which is the right of every American."

Patricia Bauer, mother



"I often found myself educating physicians about best practices in relations to my daughter’s Down syndrome. This virtual technology would be so beneficial. We would not have to educate and re-educate every new health care provider."

Jawanda Mast, mother



"One of the challenges of practicing in a small town is finding resources for issues that I rarely encounter. I frequently find myself weighing whether it's worth sending patients on 10-hour round trip drives for specialist referrals, and many families can't afford the trip at all short of an emergency. DSC2U might not replace an actual specialty clinic, but it could certainly stand to improve care for many kids without easy access to many types of specialists."

Dr. Travis Riddell, pediatrician



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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.

We created 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.



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. DSC2U provides customized information for people with Down syndrome from age 1 through adulthood/senior years. 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 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 the 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. It is not meant to help in emergencies or to address urgent medical issues. For those circumstances, please call 9-1-1 in the U.S. or go to your nearest medical provider. 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 and/or listen to a podcast summarizing the results.


The more of the intake that you complete, the more customized recommendations you will receive. For some caregivers, DSC2U can take as short as 10 minutes to fill out. Other caregivers can spend up to 45 minutes, choosing to fill out all of the questions. The intake form does not need to be completed in one session. Your responses will be saved, and you can always return to finish. Once your DSC2U intake form is completed, you will be given access to your personalized Caregiver Checklist and Primary Care Provider Plan, which will be accessed in your DSC2U portal. You may return to your DSC2U portal at any time, for no additional fee, to access these customized documents. You also have the option to click the download button to print or save a copy of these documents for your records.

Caregivers are welcome to return and re-complete DSC2U as many times as they wish. We recommend re-completing DSC2U at least once each year, timed with your loved one's annual wellness visit with their primary care provider. Your previous responses will not be saved so that you can enter new symptoms/concerns and receive new customized information. Caregivers will be charged the same user fee upon each usage.


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.


Yes. For $49, families can access DSC2U once. 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 insurance companies do cover the fee for families; a listing of such insurers can be found here.


Some local Down syndrome organizations have chosen to pay 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. Some insurance companies also cover the DSC2U fees.


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.


Yes, any caregiver is able to access DSC2U, regardless of the current medical care being received by their loved one.


You will receive a link to your Caregiver Checklist and Primary Care Provider Plan immediately after submitting your intake form.


The Caregiver Checklist and Primary Care Provider Plan are yours to keep, and you can do whatever you wish with them. You are not required to send or do anything with the reports, if you do not want to. They will contain recommendations and resources for you and the person with Down syndrome based on the input you provide in DSC2U.


Caregivers are welcome to return and complete DSC2U as many times each year as they wish. Caregivers will be charged the same user fee upon each usage.


These plans were personalized and auto-generated (by a computer) based on the information you provided and questions you answered on DSC2U. Your Caregiver Checklist will contain an explanation on why each recommendation/resource was generated, highlighting information you provided in the intake form. You are welcome to use (or not) any information that you find helpful. Your answers to the intake survey are not saved, so there is no option to "correct" any information afterwards. However, you are welcome to return to DSC2U at any time and enter new symptoms or concerns. Each time you enter new symptoms, you will be generated a new Caregiver Checklist and Primary Care Provider Plan.


We are not able to offer any medical advice or provide medical information beyond that which is included on the Caregiver Checklist.

If you would like to schedule an in-person appointment for your loved one with Down syndrome at the Massachusetts General Hospital Down Syndrome Program, please review these next steps online.

Massachusetts General Hospital also offers a remote second opinion service, at additional costs.


If you lose the e-mail with a link to your plan, please contact our Help Desk at dsc2u@mgh.harvard.edu. We will re-send the link to your Caregiver Checklist and Primary Care Provider Plan. In your DSC2U portal, you always have the option to click the download button to print or save a copy for your records.


Your primary care provider will not get a copy of this plan unless you provide it to them. In order to allow the primary care provider the chance to utilize this information fully, we encourage you to share the Primary Care Provider Plan with your health care provider before the next routine appointment or well visit. You may choose to hand deliver it, mail it or send it through a secure email or patient portal provided through your provider’s office. We also recommend that you bring a hard copy with you to the next primary care provider appointment.


No. DSC2U is entirely automated and neither you or your primary care provider will have the opportunity to discuss clinical or personal information with physicians at MGH.

Completing and submitting DSC2U does not establish a health care provider-patient relationship. It is not an attempt to practice medicine or provide specific clinical advice. It was not prepared or reviewed by a clinician specifically for you. The content of this Caregiver Checklist is not meant to be complete or exhaustive or to be a substitute for professional medical advice, diagnosis, or treatment. It should not be used to make a diagnosis or to replace or overrule a qualified health care provider's judgment.


Caregivers have the option of accessing DSC2U together or separately. Each separate usage of DSC2U will be charged the same access fee. Once the Caregiver Plan and Primary Care Provider Plan have been generated, that caregiver should feel free to share that information with any other caregivers involved in the life of their loved one with Down syndrome, as they deem appropriate.


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.


If you would like to schedule an in-person appointment for your loved one with Down syndrome at the Massachusetts General Hospital Down Syndrome Program, please review these next steps online.

Massachusetts General Hospital also offers 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.


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This work was partially supported through a Patient-Centered Outcomes Research Institute (PCORI) Research Award (AD-1507-31567).



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