CCIR Registration and Profile Update Overview

Steps for registering with CCIR
 
For your convenience, this document may be printed and used as a tool to assist you with the registration process. The entire process can take 20 minutes or more. You do not have to answer every survey question in one sitting. Please read the instructions below carefully to ensure your work is properly saved.
 
1.  Go to website www.cystinosisregistry.org
2.  Home page: click on "Register Now" button in middle column of page
3.  Understanding Your Participation page: Read information on this page to the end where you will be asked to create an account.  
5.  Create Account section: Create username and password.* Click on “Terms and Conditions” and a separate window with this information will appear. If you agree to the terms, return to the page with the “Create Account” section and click on box next to “Accept Terms and Conditions” .** Click on "Create Account" button at bottom of page to continue.
6.  Account Created page: Log in using your newly created username and password.
7.  Affected Person Information page: Complete form and click "Submit" button at bottom of page.
8. Survey pages: Complete questions. You do not have to answer every question in one sitting. You may leave questions blank and come back to update your profile later.
However, you will have to page through the entire survey in order to save your work.
9. Registration Complete page: You will know that you have reached the end of the survey when this page appears with the following message “Registration Complete! Completed 100%”.
 
You may add profile for another family member with cystinosis immediately from the Registration Complete page by continuing to step 10. Otherwise, you can return another time to enter the family member’s information by logging back in to the website and starting at step 11.
 
10. Registration Complete page: Click on “Visit My Profile” in the middle of the page.
11. My Profile page: On the upper right side of the page, click on “Add a Family Member”
12. Add Family Member page: follow instructions steps 7-9 above.
You've done it!  Your information will help cystinosis research teams find a cure! Thank you!

* You will be required to enter your username and password to access your registry profile. Please write it down somewhere for your records.  Should you forget or lose them, there is a feature on the homepage that will allow send the information to your registered email.
** You must accept the Terms and Conditions in order to participate in the Registry.

Steps for updating your profile
 
For your convenience, this document may be printed and used as a tool to assist you with the updating your profile.
 
After having viewed the entire survey and provided answers, you may return to the survey at a later time to update the profile and/or to revisit questions that you did not respond to initially.
 
There are two ways to update a profile. One way (Comprehensive Version) allows you to page through the entire survey as you did when you initially registered. Just as before, you will have to visit every page of the survey until you reach the end in order to save any changes/updates you have made. Another way (Express Version) is to identify individual questions you want to address from a list of questions and answers, and selectively answer just those questions.
 
Please use the guidelines below to determine which way is best for you.
 
1. For annual updates of the profile, it is strongly suggested you review the entire survey (Comprehensive Version) and make any necessary changes to reflect your current state of health.
2. If you are returning to the survey because you left several questions in different sections of the survey unanswered and now wish to address those questions, you are encouraged to review the entire survey (Comprehensive Version) to make sure you answer as many questions as possible.
3. If you are returning to the survey to answer just a few questions and you recall which questions those were, you are encouraged to select just those questions individually from the list in your profile (Express Version)
 
Comprehensive Version
1. Go to website www.cystinosisregistry.org
2. Home page: In left column, log in using your username and password.
3. My Profile page:  
The profile will automatically load.** Click on “Update Profile” (an upward pointing green arrow appears next to this text) on the left side of the screen.
4. Survey pages: You will find yourself on the first page of the survey. Complete questions. Remember that you will have to page through the entire survey in order to save the updated profile.
 
Express Version
1. Go to website www.cystinosisregistry.org
2. Home page: In left column, log in using your username and password. *
3. My Profile page:  The profile will automatically load ** and the survey questions and answers you provided will appear in a list. Questions are listed according to the categories they belong to.
4. To quickly find a specific survey question, locate the appropriate category heading (in bold) from the list, and then locate the specific question.
5. Click on the icon to the left of the question that is a graphic depicting a pencil and paper. A window will open up that will allow you to provide an answer to the question.
6. Select an answer option.
7. Click the “UPDATE” button that appears below the answer options. Your response to the question will be automatically updated.
 
* You will be required to enter your username and password to access your registry profile. Please write it down somewhere for your records.  Should you forget or lose them, there is a feature on the homepage that will allow send the information to your registered email.
 
** If more than one profile is registered under your account, you may have to click on the “Family” tab to select the profile you wish to update before proceeding.