Resources

DSMIG Regression

The Down Syndrome Medical Interest Group has a current consensus for families

"If your loved one is experiencing any of these symptoms, quick evaluation is recommended. Although doctors don’t know for certain, it is presumed that early diagnosis and treatment, may improve outcomes."

DSRD Checklist.docx

"Does My Loved One with Down Syndrome Have This Condition?"- A Checklist

Use the checklist as a tool to assess if loved one is experiencing DSRD

Unexplained Regression in Down Syndrome | UPMC Children's HospitalListen to the Unexplained Regression in Down Syndrome podcast from the Down Syndrome Center at UPMC Children's Hospital of Pittsburgh.

Children's Hospital of Pittsburg

This website features a podcast by Dr. Santoro. They discuss the signs of the condition and the treatment options currently being found to be helpful in the latest research.

Down SyndromeDuke pediatric geneticists provide coordinated, lifelong care for children with Down syndrome.

Duke University

"We are currently investigating why some individuals with Down syndrome may have a sudden decline in thinking, called “Down syndrome disintegrative disorder.” Through these studies, we hope to identify the causes and potential treatments for this cognitive decline."

Duke has a Down syndrome specialty clinic and is one of the leading research teams regarding DSRD.

Dukes website had a phone number listed to request an appointment

Location: Durham, NC

Down Syndrome and Regression

Massachusetts General Hospital

"The Mass General Hospital Down Syndrome Program provides state-of-the-art care by a multidisciplinary team of providers for people with Down syndrome of all ages."

Massachusetts General has a Down syndrome specialty clinic.

You can request an appointment or second opinion on this website.

Location: Lexington, MA and Boston, MA

National Down Syndrome Congress

Find a regional Down syndrome network near you with this link:

https://www.ndsccenter.org/programs-resources/affiliate-organizations/local-and-national-support-networks/

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