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.