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Email: downsyndrome@mail.nih.gov


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

To view the original video, please go to http://downsyndrome.nih.gov/

Video/ Graphics Audio
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Still image of a child with Down syndrome.
Narrator: We've learned a lot about Down syndrome since it was first described almost …

[BACKGROUND MUSIC FADES IN]
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Still image of a woman with Down syndrome using a laptop computer alongside an older man and woman.
Narrator: 150 years ago, but there is still a lot we don't know.
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Text fades in on screen:

DS-Connect®: The Down Syndrome Registry


Secure sign-in address bar appears, with "https", and then the URL: "dsconnect.nih.gov"

A scrolling view of the DS-Connect® website appears. Pointer clicks on Growth Measurements tab, displaying growth charts.
Narrator: 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.
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A scrolling view of the questionnaire section of the DS-Connect® website.

Text fades in on screen:
Just Health Information
No Blood Tests
No Tissue Samples
No Bank Account or Social Security Information
Narrator: How? By collecting health information from people with Down syndrome over time.
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Background image changes to still image of a woman with Down syndrome using a laptop computer.
Narrator: The more people who participate in DS-Connect®, the more information we can gather …
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Still image of a baby.
Narrator: … and the more health questions researchers can answer.
Dr. George T. Capone on camera.

Banner text: George T. Capone, M.D.
Director, Down Syndrome Clinic
Kennedy Krieger Institute
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 and her son, Julian, on camera.

Banner text: Allison Wohl
Parent
Allison Wohl: When I got to the DS-Connect® website, I just answered questions about Julian's medical and health history.
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Screenshots of the DS-Connect® registration web page and registrant information web page.
Ms. Wohl: It was really easy to sign up. You just go to the website, enter your information, and then go from there.
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Screenshot of the DS-Connect® registrant information web page, including map of registrants and charts of health data.
Ms. Wohl: And it was really easy to see how Julian was similar or different from other people that were already in the registry.
David Egan and Kathleen Egan on camera.

Banner text: David Egan
Self-Advocate
David Egan: It gives you definitely a general understanding of Down syndrome, mostly. And it gives people a sense that …
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Video fades to still image: A woman and her daughter smiling.
Mr. Egan: … it is a great resource …
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Still image of a woman smiling at a man with Down syndrome who is sitting at a computer.
Mr. Egan: … that can be used for communities everywhere.
Ms. Wohl on camera. Ms. Wohl: Having all of Julian's medical information and history in one place helps our pediatrician …
Julian Wohl playing with a stack of cards on camera. Ms. Wohl: … to look for things that are pretty typical in the Down syndrome population but that are easily manageable. There's actually a list …
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Screenshot of the Healthcare Providers tab on the DS-Connect® website.
Ms. Wohl: … of health care providers on the registry that other families can access.
Ms. Wohl on camera. Ms. Wohl: The provider listing is a unique feature of the Down Syndrome Registry.
Kathleen Egan and Mr. Egan on camera.

Banner text: Kathleen Egan
Parent
Kathleen Egan: I encouraged David to register in the DS registry because I think it's a good thing, a good cause …
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Photographs of Kathleen and David Egan.
Ms. Egan: … 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 …
Ms. Egan and Mr. Egan on camera. Ms. Egan: … is by volunteering.
Dr. Capone on camera. Dr. Capone: DS-Connect® allows people to participate from …
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Screenshot of a world map of registrants on the DS-Connect® website.
Dr. Capone: … all corners of the globe. They answer the same kinds of health questions, …
Dr. Capone on camera. Dr. Capone: … 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.
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A screenshot of a National Institutes of Health web page about clinical trials.
Banner text: NIH CLINICAL TRIALS AND YOU
Narrator: DS-Connect® registrants also have the chance to learn about clinical trials, …
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Still image of a researcher applying a cotton swab to a Petri dish.
Narrator: … key research studies used to create and test new treatments.
Dr. Capone on camera. Dr. Capone: For the purpose of conducting clinical trials, the DS-Connect® registry can provide a large …
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Image of a doctor holding a stethoscope to a baby's chest.
Dr. Capone: … pool of potential participants …
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Still image of a woman smiling at a young girl with Down syndrome.
Dr. Capone: … who share common features, such as …
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Still image of a woman with Down syndrome.
Dr. Capone: … medical condition, age, gender.
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Still image of a woman with Down syndrome having her height measured by a doctor.
Dr. Capone: Participation in any clinical trial is…
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Still image of a group of children with Down syndrome and their parents reading from papers handed to them by a woman.
Dr. Capone: … totally voluntary, and your participation …
Dr. Capone on camera. Dr. Capone: … can be withdrawn at any time.
Mr. Egan and Ms. Egan on camera. Mr. Egan: I want to make sure that many others like me …
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A man with Down syndrome holding a basketball.
Mr. Egan: … can advance those research, …
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A woman with Down syndrome wearing medical scrubs and working in a laboratory.
Mr. Egan: … and whether if they want to take part in the research, …
Mr. Egan on camera. Mr. Egan: or the clinical trial, or the registry—so, either one, it's up to you to choose.
Ms. Egan and Mr. Egan on camera. 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 …
Text overlaid on video: Confidential
Secure
Ms. Egan: … confidential, secure, so nothing to lose about putting in the information.
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Still image of a boy with Down syndrome playing the violin.
Ms. Egan: Ultimately, when medicine …
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Still image of a man with Down syndrome swimming.
Ms. Egan: … does things for us, it is to improve our lives.
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Still image of a laughing girl with Down syndrome.
Ms. Egan: In the long run, it helps all of us.
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Still image of a man with Down syndrome in a kitchen stirring the contents of a bowl with a wooden spoon.
Mr. Egan: Down syndrome is just a pathway to …
Mr. Egan and Ms. Egan on camera. Mr. Egan: … understanding all the other disabilities, so it can open each one.
Ms. Wohl on camera. Ms. Wohl: Our kids are living longer. They're doing more. They're thriving. Once you can manage their …
Julian Wohl playing with a stack of cards on camera. Ms. Wohl: … medical conditions, really, the sky's the limit. The Down Syndrome Registry can …
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Still image of a man watching his son with Down syndrome use a computer.
Ms. Wohl: … help him thrive by being a repository for information …
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Image of a man and his son with Down syndrome laughing together as they use a computer.
Ms. Wohl: … on health conditions and treatments for kids with Down syndrome.
Mr. Egan on camera. Mr. Egan: I hope many others can join the DS-Connect®.
Dr. Capone on camera. Dr. Capone: I think DS-Connect® is a really exciting initiative, and I'm urging all families to get DS-Connected.
Ms. Wohl and her son, Julian, on camera. Ms. Wohl: We're DS-Connected.
Mr. Egan and Ms. Egan on camera. Mr. Egan: I am DS-Connected. Are you?
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National Institutes of Health logo
Turning Discovery into Health
Narrator: Help expand our understanding of Down syndrome, so those with Down syndrome can live healthier lives.
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Visit DSConnect.nih.gov and get DS-Connected today!
Narrator: Visit DSConnect.nih.gov and get DS-Connected today.
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Visit DSConnect.nih.gov and get DS-Connected today!

Brought to you by the Down Syndrome Consortium Members
  • National Institutes of Health
  • American Academy of Pediatrics
  • American Association on Intellectual and Developmental Disabilities
  • Association of University Centers on Disabilities
  • Down Syndrome Affiliates in Action
  • Down Syndrome Medical Interest Group
  • LuMind Foundation
 
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Visit DSConnect.nih.gov and get DS-Connected today!

Brought to you by the Down Syndrome Consortium Members
  • Global Down Syndrome Foundation
  • International Mosaic Down Syndrome Association
  • Jérome Lejeune Foundation
  • National Down Syndrome Congress
  • National Down Syndrome Society
  • Research Down Syndrome
  • Special Olympics International
 
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Visit DSConnect.nih.gov and get DS-Connected today!

Special thanks to

David Egan
Kathleen Egan
Allison Wohl
Julian Wohl
George T. Capone M.D.

HHS logo
NIH logo
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