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Sunday, October 23, 2016

DS Connect: The Down Syndrome Registry

If you are the parent of a person with Down syndrome, or are an adult with Down syndrome, have you heard of, and have you registered with, DS Connect: The Down Syndrome Registry?

I've blogged about this registry before, but just in case there are new parents out there who have stumbled on my blog I wanted to mention it again.

The registry is maintained by the National Institutes of Health and has many consortium members to include (in no particular order) the NDSS, NDSC, SO, GDSF, DSAIA, DSI, IMDSA, LuMind RDS, and JLF.

The registry is where individuals and professionals can set up private accounts and be connected for research studies. You control the information you put in the registry via a secure and password protected account.

Researchers can access de-identified aggregate data to identify target populations for study or trial planning/recruitment.

The goal is to have 10,000 families registered and they are still well short of that goal, but are making some progress (almost 3500 registered families).

Here is the FAQ page to answer many more questions.


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