LD Connect Registry

If you have questions that are not answered here, please contact LD Connect registry coordinators at: coordinator@ldconnect.org

How do I register?

1. Click the button "Join the Registry" on the LD Connect registry homepage.
2. On the Registration page, "Create an account," by providing your name and E-mail address. Choose a Username and Password.
3. Read the online consent form and check the appropriate consent/assent boxes.
4. Enter the Security code and click "Register."
5. On the next page, "Account Details", fill out the information for the person who is being registered.

How can my doctor or healthcare provider help me register?

1. You may give your permission for your medical caregiver (such as a doctor) to enter your information into the registry. In this case, either the medical caregiver or the participant/participant’s legal guardian may be the account holder.
   • Remember: The account holder is responsible for completing and updating the surveys and for informing the participant about messages from the registry.
2. Click the button "Join the Registry" on the LD Connect registry homepage.
3. On the Registration page, "Create an account," by providing your name and E-mail address. Choose a Username and Password. Select the relationship to the participant as "medical caregiver".
4. Read the online consent form and check the appropriate consent/assent boxes.
   • The medical caregiver should print and provide a copy of the consent page to the participant.
5. Enter the Security code and click "Register."
6. On the next page, "Account Details", fill out the information for the person who is being registered.
7. Complete the Medical Survey based on answers from the participant.
   • Tip: the survey does not need to be completed in one session.
8. Print the Medical Survey answers and provide a copy to the participant.
9. Complete the additional surveys as they are offered based on answers from the participant. Print the answers for the remaining surveys and provide a copy to the participant.

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.

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. A new temporary 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. 

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. 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 you have received your Username and reset your Password and still cannot access your account, please contact the registry coordinator. 

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.
3. If you have received your Username and reset your Password and still cannot access your account, please contact the registry coordinator.

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. Enter a new password in the provided space at the bottom of the form. Re-enter it again.
5. Click the "Update" button at the bottom of the page.

How do I update my account information or change my email address?

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 Medical Survey, you will automatically be directed to the Survey. At the top of the screen, click the button for "My Profile" to bypass the Survey temporarily. Be sure to return and finish your Survey!
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.

How do I attach test results?

1. Login to your account.
2. Below the participant's name, please click the tab for "Attachments."
3. Follow the instructions to upload your results or documents.

How do I enter growth measurements?

1. Login to your account.
2. Below the participant's name, please click the tab for "Growth Measurements."
   • Tip: If you have not completed the Medical Survey, you will first be directed to the Survey. Click the button for "My Profile" to bypass the Survey temporarily. Be sure to return and finish your Survey!
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 results of the registry?

1. Log into your account.
2. Click button for "Registry Data" at the top of the window. 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 "Medical Survey."
3. If you have not completed the "Medical Survey," click the button for "My Profile."
4. If you are not automatically directed to the survey, click the link for "Medical Survey." This must be finished before you can see the survey results.

How do I change an answer to a survey question?

1. Log into your account.
2. Click the name of the Survey 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 survey or complete my yearly update?

1. Log into your account.
2. Click the name of the Survey 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 Survey.

I checked the wrong diagnosis and the site indicates that I am not eligible. How do I enter the right diagnosis?

1. Log into your account.
2. Click the name of the Medical Survey.
3. Click the link for "Re-take the survey” to change the diagnosis.