To view the original video, please go to http://downsyndrome.nih.gov/
| Video/ Graphics | Audio |
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| GRAPHICS SLIDE: 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] |
| GRAPHICS SLIDE: 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. |
| GRAPHICS SLIDE: 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. |
| GRAPHICS SLIDE: 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. |
| GRAPHICS SLIDE: 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 … |
| GRAPHICS SLIDE: 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. |
| GRAPHICS SLIDE: 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. |
| GRAPHICS SLIDE: 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 … |
| GRAPHICS SLIDE: Video fades to still image: A woman and her daughter smiling. |
Mr. Egan: … it is a great resource … |
| GRAPHICS SLIDE: 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 … |
| GRAPHICS SLIDE: 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 … |
| GRAPHICS SLIDE: 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 … |
| GRAPHICS SLIDE: 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. |
| GRAPHICS SLIDE: 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, … |
| GRAPHICS SLIDE: 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 … |
| GRAPHICS SLIDE: Image of a doctor holding a stethoscope to a baby's chest. |
Dr. Capone: … pool of potential participants … |
| GRAPHICS SLIDE: Still image of a woman smiling at a young girl with Down syndrome. |
Dr. Capone: … who share common features, such as … |
| GRAPHICS SLIDE: Still image of a woman with Down syndrome. |
Dr. Capone: … medical condition, age, gender. |
| GRAPHICS SLIDE: Still image of a woman with Down syndrome having her height measured by a doctor. |
Dr. Capone: Participation in any clinical trial is… |
| GRAPHICS SLIDE: 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 … |
| GRAPHICS SLIDE: A man with Down syndrome holding a basketball. |
Mr. Egan: … can advance those research, … |
| GRAPHICS SLIDE: 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. |
| GRAPHICS SLIDE: Still image of a boy with Down syndrome playing the violin. |
Ms. Egan: Ultimately, when medicine … |
| GRAPHICS SLIDE: Still image of a man with Down syndrome swimming. |
Ms. Egan: … does things for us, it is to improve our lives. |
| GRAPHICS SLIDE: Still image of a laughing girl with Down syndrome. |
Ms. Egan: In the long run, it helps all of us. |
| GRAPHICS SLIDE: 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 … |
| GRAPHICS SLIDE: 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 … |
| GRAPHICS SLIDE: 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? |
| GRAPHICS SLIDE: 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. |
| Text fades in on previous slide: Visit DSConnect.nih.gov and get DS-Connected today! |
Narrator: Visit DSConnect.nih.gov and get DS-Connected today. |
| GRAPHICS SLIDE: Visit DSConnect.nih.gov and get DS-Connected today! Brought to you by the Down Syndrome Consortium Members
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| GRAPHICS SLIDE: Visit DSConnect.nih.gov and get DS-Connected today! Brought to you by the Down Syndrome Consortium Members
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| GRAPHICS SLIDE: 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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