Current estimates suggest that over 95% of individuals with Down syndrome do not have access to a Down syndrome specialty clinic. Researchers at Massachusetts General Hospital have created DSC2U as a way to address this need and are evaluating how it works.

We need your help in testing this service!


You may be eligible to participate in this research if you meet all of the following:

  • You live in the United States.
  • You have a child or dependent with Down syndrome.
  • Your child or dependent is one year or older.
  • Your child or dependent will have an annual well visit with their doctor or primary care provider before September 30, 2018.
  • Your child or dependent has not been seen at a Down syndrome specialty clinic within the past 3 years.


I'm Interested

Participation in this study will not provide direct access to Massachusetts General Hospital providers.







DSC2U is an online form consisting of ten sections of questions. Some sections ask caregivers to identify current symptoms in the person with Down syndrome, 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 that caregivers are able to complete if more information is desired on these topics. A caregiver’s response to DSC2U will generate two personalized documents: (1) a Caregiver Checklist and (2) a Primary Care Provider Plan.

DSC2U is part of a research project. If it is successful, we hope to make it available on a continuous basis in the future.


DSC2U is part of a research project right now. There are no costs for you to participate. In fact, you will be compensated at various points throughout the study for your participation.


The Caregiver Checklist is intended to provide useful information to you for reference and educational purposes only. It will contain auto-programmed suggestions based on your answers to the DSC2U survey and national guidelines. 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 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. Here is an example of a Caregiver Checklist.

The Primary Care Physician Plan is a document that you can give to the doctor of your son/daughter/dependent. This Plan will contain auto-programmed suggestions for the doctor based on answers that you provide to the DSC2U. Here is an example of a Primary Care Provider Plan.


Yes. We are testing the efficacy and effectiveness of DSC2U by designing it in the context of a randomized control trial. This is considered a research project. Upon confirmation of your eligibility and registration as a participant, you will be selected at random to be in Group A or Group B (see Study Timeline graphic). Regardless of the group you are randomized into, all participants all have access to DSC2U by the end of the study.


The "intervention" is an online tool in a questionnaire/survey format that will ask you a series of questions about your loved one with Down syndrome, which we call Down Syndrome Clinic to You (DSC2U). Based on your responses, you will be generated a personalized checklist of recommendations and resources, drawing from healthcare guidelines specific to people with Down syndrome. These recommendations and resources will be generated in two templates: a Caregiver Checklist for you, and a Primary Care Provider Plan to be taken to the primary care provider of the person with Down syndrome.


If your loved one with Down syndrome has been seen at a Down syndrome specialty clinic from this list or another Down syndrome specialist within the last three years, you would not be eligible to take part in this study at this stage. Our research team would like to first test the effectiveness of our online forms for those families who do not already have access to an in-person Down syndrome specialty clinic or Down syndrome specialist.


We invite one parent or caregiver to sign consent and complete the intake form. 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.


All caregiver participants will receive both by the end of this study. Some caregivers will be asked to complete DSC2U (and receive both plans) about 8 weeks prior to the next wellness visit for their son/daughter. Other caregivers will be invited to complete DSC2U (and receive the plans) about 7 months into the research project. The plans can then be used during future wellness visits.


The Caregiver Checklist is yours to keep, and you can do whatever you wish with it. It will contain recommendations and resources for you and the person with Down syndrome based on the input you provide in DSC2U. In order to allow the primary care provider the chance to utilize this information fully, we encourage you to e-mail, mail, or hand deliver the Primary Care Provider Plan in advance of the next routine appointment or well visit. You primary care provider will not get a copy of this Plan unless you provide it. We also recommend that you bring a hard copy with you to the next primary care provider appointment for them to review.


All eligible caregivers will have one opportunity during the course of this research project to complete DSC2U. All caregivers who complete DSC2U will receive one Caregiver Checklist and one Primary Care Provider Plan during the course of this research project. If DSC2U is successful, we hope to make it available on a continuous basis in the future.


These plans were personalized and auto-generated (by a computer) based on the information you provided 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 will have provided in the intake form. You are welcome to use (or not) any information that you find helpful. Your responses are not saved on DSC2U, so there is no option to "correct" any information afterwards.


If you lose the e-mail with a link to your plan, please contact our study coordinator at dsc2u@mgh.harvard.edu. We will re-send the link to your Caregiver Checklist and Primary Care Provider Plan.

Your plan will be available online until July 31, 2019. Be sure to click the download button to download a copy to save for your records.


In order to allow the primary care provider the chance to utilize this information fully, we encourage you to e-mail, mail, or hand deliver the Primary Care Provider Plan in advance of the next routine appointment or well visit. You primary care provider will not get a copy of this Plan unless you provide it. We also recommend that you bring a hard copy with you to the next primary care provider appointment for them to review.

In addition to bringing a copy to the doctor in person, you may choose to mail a copy to the doctor in advance or send it to your provider through a secure email or patient portal.


No. This intervention 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. If needed, there are team members who are happy to answer any technical questions that may arise in the course of the study.

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 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.





"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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