To view the original video, please go to http://www.nichd.nih.gov/health/topics/down/researchinfo/Pages/activities.aspx
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GRAPHICS SLIDE: Animation of the NIH/Eunice Kennedy Shriver National Institute of Child Health and Human Development logo |
[MUSIC] |
GRAPHICS SLIDE: Video of activity on the DS-Connect® website. |
Narrator: Creating an account on DS-Connect®: The Down Syndrome Registry is fast and easy. |
GRAPHICS SLIDE: Video zooms in on "dsconnect.nih.gov" being typed into a web browser address field. |
Narrator: First, visit dsconnect.nih.gov … |
GRAPHICS SLIDE: Video of activity on the DS-Connect® homepage. Cursor clicks on "Join the Registry" button. |
Narrator: … and click the blue button “Join the Registry.” |
GRAPHICS SLIDE: Video of the "Step 1: Create an Account" fields being filled in on the registration page. |
Narrator: This will take you to the registration page, which explains the steps for creating an account and participating in the registry. Enter your first and last name. Then, select your relationship to the participant with Down syndrome. Next, enter your email address. This will be the address to which we send all of our communications. Re-enter the email to confirm. You also have the option to enter a second email address. Now, select a user name for the account. This also can be your primary email address. You are ready to create your password. The password should be at least eight characters and contain at least one lowercase letter, one uppercase letter, one number, and one special character, like an exclamation point. Your password cannot contain any spaces. For security reasons, you will need to change your password about once a year. Be sure to choose a password that will be easy for you to remember. Re-enter your password to confirm. |
GRAPHICS SLIDE: Video of scrolling through the "Step 2: Review the online consent form" section on the registration page. |
Narrator: Next, read the online consent form carefully. This provides important information about the registry. |
GRAPHICS SLIDE: Video of scrolling through the "Step 3: Click the appropriate consent boxes" section and filling in the appropriate fields. |
Once you have read the form, you will be asked to check the appropriate consent boxes. Pick the appropriate consent option that applies to you. If you have a child with Down syndrome who is aged 7 or older, you must obtain their assent to be part of the registry. |
GRAPHICS SLIDE: Video of code at bottom of page, filling in the code field, and clicking the "Register" button. After registration, a pop-up window appears, saying that you are now accessing DS-Connect: The Down Syndrome Registry, which may contain sensitive information that must be protected under the U.S. Privacy Act. |
You will then need to enter the code displayed on the screen. You can click on the audio icon if you are having trouble seeing the code. Next, click “Register” to create your account. You are now DS-Connected! |
GRAPHICS SLIDE: Video of the "Edit Your Details" page, with its health and demographic fields. |
Narrator: The next step will be to enter health information about the participant. To learn more about how to complete health and demographic details about the participant with Down syndrome, view our next tutorial. |
GRAPHICS SLIDE: For questions, contact DSConnect@nih.gov NIH/Eunice Kennedy Shriver National Institute of Child Health and Human Development logo |
Narrator: If you still have questions, please email us at DSConnect@nih.gov. |