Need Help?

If you have questions that are not answered here, please contact DS-Connect® registry coordinator at: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

 

How do I register?

  1. Click the button "Join the Registry" on the DS-Connect® registry homepage.
  2. On the Registration page, you will first "Create an account," which means entering your name and E-mail address and creating a Username and Password.
    • Tip: This Username and Password will be required each time you log into the account.
  3. Read the online consent form.
  4. Check the appropriate consent/assent boxes.
  5. Enter the Security code.
  6. Click "Register."
  7. On the next page, "Account Details", fill out the information for the person with DS being registered.

I cannot see the "Forgot Login" link?

  1. Check you browser's zoom level.
  2. If it is 100% or more, adjust the zoom level of your browser or device to 75%.

What if I forget my Username?

  1. Click "Forgot Login?" underneath the "Login" button on the upper right of the screen.
  2. Check the box for "Lost Username".
  3. Enter your E-mail address.
  4. Click "Send Username."
  5. Your Username will be sent to your E-mail address.
  6. If this still does not work, reset your Password (see below).
  7. If you have received your Username and reset your Password and still cannot access your account, please contact the registry coordinator at: This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

What if I forget my Password?

  1. Click "Forgot Login?" underneath the "Login" button on the upper right of the screen.
  2. Check the box for "Lost Password".
  3. Enter your Username.
  4. Enter your E-mail address.
  5. Click "Send Password."
  6. Your Password will be sent to your E-mail address.
  7. If this still does not work, please use the "Lost Username" function to receive the correct Username.
  8. If you have received your Username and reset your Password and still cannot access your account, please contact the registry coordinator at: This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

What if I forget both my Username and Password?

  1. Click "Forgot Login?" underneath the "Login" button on the upper right of the screen.
  2. Check the box for "Lost Username."
  3. Enter your E-mail address.
  4. Click "Send Username."
  5. Your Username will be sent to your E-mail address.
  6. Please click the same "Forgot Login" link underneath the "Login" button.
  7. Check the box for "Lost Password."
  8. Enter your Username.
  9. Enter your E-mail address.
  10. Click "Send Password."
  11. Your Password will be sent to your E-mail address.
  12. If this still does not work, please contact the registry coordinator at: This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

What if the Password I created does not work?

  1. Please follow the instructions above to reset your Password.
  2. If this does not work, please follow the instructions above to retrieve the Username and try to login with your Username exactly as it appears in the Username reminder email and the temporary password.
  3. If you have received your Username and reset your Password and still cannot access your account, please contact the registry coordinator at: This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

What are the requirements for a Password?

  1. The Password needs to be 8 characters long.
  2. Make sure you include 1 upper case, 1 lower case, 1 number and 1 symbol in the Password.
  3. Make sure there are no spaces between the characters.

How do I change my Password?

  1. Log in to your account.
  2. Below the participant's name, please click the tab for "Account Info."
  3. Click "Update" near the top left corner of the tab.
  4. Scroll down to the "Summary of Account Holder's Contact Information."
  5. Enter a new password in the provided space. Re-enter it again.
  6. The Password needs to be 8 characters long.
  7. Make sure you include 1 upper case, 1 lower case, 1 number and 1 symbol in the Password.
  8. Make sure there are no spaces between the characters.
  9. Click the "Update" button at the bottom of the page.

How do I update my account information?

  1. Log in to your account.
  2. Below the participant's name, please click the tab for "Account Info."
    • Tip: If you have not completed the Initial Health Questionnaire, you will first be directed to the Questionnaire. Click the button for "My Profile" to bypass the Questionnaire temporarily. Be sure to return and finish your Questionnaire!
  3. Click "Update" near the top left corner of the tab.
  4. Change the information as needed.
  5. Click the "Update" button at bottom of page.
    • Tip: Do not enter your Password into the Password change field unless you want to change to a new Password.
  6. If this does not work, please contact the registry coordinator at: This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

How do I add a Family Member to my account?

  1. Log in to your account and click the My Profile page.
  2. Under your name, click the "Add Family Member" link."
  3. Enter your family member's name and your relationship to your family member.
  4. Enter the demographic information about your family member, answer the consent and assent answers for your family member. In the Account information section, you do NOT need to enter a new password. Click Update.
  5. Answer the Initial Health Questionnaire for your family member.
  6. You will then be returned to your My Profile page. You will see a pull down menu titled "Select Family Member to View". Your name and your family member's name will appear in the pull down menu. From now on, when you log in, you can use this pull down menu to view or change your account or your family member's account.
  7. If you would like to add another family member, you may do so by clicking "Add Family Member".

What if I get an error message "Cannot use last 24 passwords"?

  1. Due to security requirements of the registry, users cannot re-use a Password that has been used in the 24 previous Password settings. This error message appears when you are attempting to change your Password and have chosen a password that has been used previously in your account.
    • Tip: When updating information in your account, on the "Account Info" tab, do not enter a Password into the field for "New password" unless you intend to change your Password.
  2. If you receive this error message, you need to choose a new Password which meets the Password criteria and has not been used in the previous 24 Password settings.
    • Note: any information that has been entered and changed on this page may be removed if the Password is incorrectly entered. You will have to re-enter all the information again.

What if I get a message "Your DS-Connect® registry account will expire in 2 weeks"?

  1. This message appears when you have not logged into your account for over 6 months.
  2. Log into https://DSConnect.nih.gov immediately to prevent your account from being deactivated.
  3. You will also be prompted to change your password.
  4. Once your account expires, you will not be able to log into your account, and you must contact the DS registry coordinator (Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it ) to have your account re-activated.

How do I change the date of birth of the person with DS?

  1. Log into your account.
  2. Below the participant's name, please click the tab for "Account Info."
    • Tip: If you have not completed the Initial Health Questionnaire, you will first be directed to the Questionnaire. Click the button for "My Profile" to bypass the Questionnaire temporarily. Be sure to return and finish your Questionnaire!
      • Click "Update" near the top left corner of the tab.
      • Change date of birth of the participant with DS.
      • Click "Update" button at bottom of page.
      • If this does not work, please contact the registry coordinator at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

My email address has changed. How do I update the registry?

  1. Log in to your account.
  2. Below the participant's name, please click the tab for "Account Info."
    • Tip: If you have not completed the Initial Health Questionnaire, you will first be directed to the Questionnaire. Click the button for "My Profile" to bypass the Questionnaire temporarily. Be sure to return and finish your Questionnaire!
  3. Click "Update" near the top left corner of the tab.
  4. Change your email address.
  5. Click "Update" at the bottom of the page.

How do I enter growth measurements for the person with DS?

  1. 1) Log in to your account.
  2. Below the participant's name, please click the tab for "Growth Measurements."
    • Tip: If you have not completed the Initial Health Questionnaire, you will first be directed to the Questionnaire. Click the button for "My Profile" to bypass the Questionnaire temporarily. Be sure to return and finish your Questionnaire!
  3. To enter a height, click the green icon "+ Add value."
  4. Select the date the measurement was taken.
  5. Select the unit.
  6. Enter the number, for example 60.
  7. Click "Update."
  8. Repeat steps 3 to steps 7 to enter a weight.
  9. Add as many heights and weights as you want to create your own growth chart!

How do I see the Questionnaire results in the registry?

  1. Log into your account.
  2. Click button for "Registry Data" and choose the section of interest to see the charts.
    • Tip: Don't see the charts? In order to see the survey results, you must first complete the "Initial Health Questionnaire."
  3. If you have not completed the "Initial Health Questionnaire," click the button for "My Profile."
  4. If you are not automatically directed to the survey, click the link for "Initial Health Questionnaire." All of the required questions in the health survey pages must be completed before you can see the survey results.

How do I change the answer to a Questionnaire question?

  1. Log into your account.
  2. Click the name of the Questionnaire which you would like to review.
  3. Choose a page name to see the questions on the page.
  4. Use the edit icon next to each question to update a single answer.
    • Tip: For yearly updates, please choose the link to "Re-take the survey."

How do I update my full Questionnaire or complete my yearly registry update?

  1. Log into your account.
  2. Click the name of the Questionnaire which you would like to update.
  3. Click the link for "Re-take the survey."
  4. Be sure to click through all the pages to submit the Questionnaire.

I cannot see the Questionnaire answers I had filled in the last time I was logged in. Why not?

  1. Log into your account.
  2. Click the link for "Re-take the survey."
  3. Be sure to click "Next" at the bottom of the page to ensure that the answers are saved before you log out.

What are my options if I do not want to be in DS-Connect®?

  1. Taking part in DS-Connect® is completely voluntary-it is your choice. You do not have to join this Registry. If you decide not to join, you are still a member of the DS community. You can continue to receive health care and other support even if you decide not to join DS-Connect®.