What is DS-Connect®: The Down Syndrome Registry?

What is DS-Connect®: The Down Syndrome Registry?


NARRATOR: We’ve learned a lot about Down syndrome
since it was first described almost 150 years ago, but there is still a lot we don’t know. DS-Connect®: The Down Syndrome Registry aims to answer questions about Down
syndrome and the health of those who have it. This survey provides a secure and easy way to share health information so
that researchers can learn more about Down syndrome and develop new treatments. How? By collecting health information from
people with Down syndrome over time. The more people who participate in
DS-Connect®, the more information we can gather, and the more health questions
researchers can answer. GEORGE T. CAPONE, M.D.: The DS-Connect® is a central, confidential,
and secure platform for collecting health care information that will improve the quality of health for people with
Down syndrome. ALLISON WOHL: When I got to the DS-Connect® website, I just answered questions about Julian’s
medical and health history. It was really easy to sign up.
You just go to the website, enter your information, and then go from
there. And it was really easy to see how Julian was similar or different from other
people that were already in the registry. DAVID EGAN: It gives you definitely a general
understanding of Down syndrome, mostly. And it gives people a sense that it is a great resource that can be
used for communities everywhere. MS. WOHL: Having all of Julian’s medical information and history
in one place helps our pediatrician to look for things that are pretty
typical in the Down syndrome population but that are easily manageable. There’s actually
a list of health care providers on the registry that other families can access. The provider listing is a unique feature
of the Down Syndrome Registry. KATHLEEN EGAN: I encouraged David to register in the DS registry because I think it’s a good
thing, a good cause—something that we should be doing. We need to
help the research community understand Down syndrome and other disabilities, and
the only way we can help is by volunteering. DR. CAPONE: DS-Connect® allows people to participate from all corners of the globe.
They answer the same kinds of health questions, and that permits researchers to identify similarities, differences, and important trends in the population that may then be the basis for further,
more focused research studies. NARRATOR: DS-Connect® registrants also have the
chance to learn about clinical trials, key research studies used
to create and test new treatments. DR. CAPONE: For the purpose of
conducting clinical trials, the DS-Connect® registry can provide a large pool of potential participants who share common features, such as
medical condition, age, gender. Participation in any clinical trial is totally voluntary, and your
participation can be withdrawn at any time. MR. EGAN: I want to make sure that
many others like me can advance those research, and whether if they
want to take part in the research, or the clinical trial, or the registry— so either one, it’s up to you to choose. MS. EGAN: And the nice thing I liked about it: You
didn’t ask for Social Security number. You didn’t ask for personal information
that people feel a little bit sensitive about.
So I felt it was confidential, secure, so nothing to lose about
putting in the information. Ultimately, when medicine does
things for us, it is to improve our lives. In the long run, it helps all of us. MR. EGAN: Down syndrome is just a
pathway to understanding all the other disabilities,
so it can open each one. MS. WOHL: Our kids are living longer. They’re doing more. They’re thriving. Once you can manage
their medical conditions, really, the sky’s the limit. The Down
Syndrome Registry can help him thrive by being a repository for information on health conditions and
treatments for kids with Down syndrome. MR. EGAN: I hope many others can join the DS-Connect®. DR. CAPONE: I think DS-Connect® is a really exciting
initiative, and I’m urging all families to get DS-Connected. MS. WOHL: We’re DS-Connected. MR. EGAN: I am DS-Connected. Are you? NARRATOR: Help expand our understanding of Down syndrome, so those with Down syndrome can live healthier lives Visit DSConnect.nih.gov and get DS-Connected today.

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