Down Syndrome Survey Opportunity

Massachusetts General Hospital Down Syndrome Program (MGH DSP) is conducting a survey funded by the National Institutes of Health to help create a health instrument that assesses health in individuals with Down syndrome. Dr. Stephanie Santoro MD and the MGH DSP are actively seeking participants.

If your child with Down syndrome is less than 22 years old, you are eligible to participate. The survey is up to 100 questions and should take less than 40 minutes to complete.

Transcript of MGH DSP's survey flyer (view the flyer below):

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WHO

Dr. Stephanie Santoro MD (right) is a medical geneticist at Massachusetts's General Hospital's Down Syndrome Program (MGH DSP). Dr. Santoro and the MGH DSP team are creating an instrument that directly assesses the health of individuals with Down syndrome.

WHAT

The survey is up to 100 questions and should take less than 40 minutes. The survey will ask questions about your child with Down syndrome and their health.

WHEN

Survey 1: Now!

Survey 2: 2-4 weeks after taking Survey 1

WHY

There are over 200,000 individuals with Down syndrome living in the United States and studies to date have focused on outcomes outside of health. It is important to accurately measure the health of all individuals with Down syndrome and there aren't similar tools available for this population. Creating such an instrument will provide a measure of the current state of health for an individual with Down syndrome and will be helpful in future research aimed at improving the health and happiness of individuals with Down syndrome.

If you are interested in filling out the MGH DSP survey, go to: https://redcap.partners.org/redcap/surveys/?s=4F99E8L7R9XLRT3R&source=9

Participation is voluntary and you have the right to withdraw at any time.

IRB Contact: “If you’d like to speak with someone not involved in this research about your rights as a research subject, or any concerns or complaints you may have about the research, contact the Partners Human Research Committee at (857) 282-1900”

Research Sponsor: None
Research Funding: National Institutes of Health

If you have any questions, please contact researchdownsyndrome@mgh.harvard.edu

Principal Investigator: Stephanie Santoro, MD

MGH Down Syndrome Program
125 Nashua St., Suite 821
Boston, MA, 02114

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Click on the Flyer below to download it:

If you are interested in filling out the MGH DSP survey, go to: https://redcap.partners.org/redcap/surveys/?s=4F99E8L7R9XLRT3R&source=9