Understanding Your Participation

Individuals eligible to join the Cure Cystinosis International Registry (CCIR) include those with symptoms of cystinosis.  To begin the registration process, please review the information below and create your account. After your account has been created, you must log into your account to complete the profile questionnaire.  If you are registering for multiple members of one household, you will create a single family account and register the first individual.  You will then be able to add other family members.

Understanding your Participation in the Cure Cystinosis International Registry (CCIR)

The purpose of the CCIR profile is to assist clinicians, pharmaceutical companies, and researchers in developing new clinical trials for cystinosis. Collecting the information you create when you develop a profile will enable CCIR and researchers to learn more about the scope and impact of this genetic disorder on individuals and families. Having this information is crucial in the process of developing new, improved treatments for cystinosis.  CCIR will also provide you with a means of accessing information regarding clinical trials for which you or your child may be eligible.

How will creating a CCIR profile affect me or my child?

This registry has been created specifically for individuals with cystinosis. Parents and guardians of persons with cystinosis may register for them. After registering and creating a profile, you will be contacted periodically with information about new research studies/clinical trials as they become available, as well as upcoming activities and resources. You will also be able to use CCIR to understand how you or your child fit within the larger cystinosis community.

Will I need to provide CCIR with additional information?

It is important to have the most current information in the database to assist in developing research studies/clinical trials. Therefore, from time to time, we will ask you to update your/your child’s profile. Periodically updating this information will also keep you closely attuned to the status of your/your child’s health in relation to the larger Cystinosis Community.

How is my/my child's privacy protected?

All of the information you provide to CCIR will be maintained in a secure database, and any information that could identify you and your family members will not be shared without your expressed approval. Should new knowledge become available that may affect you and your family; that is, as clinical trials or research studies are developed for possible participation, CCIR, based on the information you placed in your profile, will then put you in contact with the investigators responsible for the proposed research study/clinical trial, so that you can decide if you want to learn more. The investigator(s) responsible for the research study/clinical trial will determine if you or your child is eligible to participate and is responsible to answer any questions about the research study/clinical trial.  CCIR is deeply committed to issues of privacy and identity, and will continue to take every available measure to ensure the security of your personal information.

What happens to the information I put in my/ my child’s profile, and who has access to it?

The goal of this registry is to make the information you provide searchable, while protecting your identity. De-identified data (information from which all personal identification has been removed) gathered from the profiles will be made available to the CCIR community of registered scientists, researchers, clinicians, pharmaceutical companies, in the hope that this de-identified information will support breakthroughs and clinical trials that could lead to better treatments and care management.

The de-identified data collected and compiled by this registry belongs to the CCIR community. The Cystinosis Research Foundation is the guardian of the information contained within the registry.  The CCIR will perform the searches for specific questions within the CCIR registry and provide reports back to you and the medical research community. Some of this de-identified information will also be shared with databases focusing on the broader range of rare diseases.

What if I register myself/my child in more than one registry/database?

It is alright if you participate in more than one registry. The goal of CCIR is to coordinate activities with other registries where possible.  CCIR will put in place checks and safeguards to help identify duplication of registrants and to coordinate with other registries in placing information in global databases. You and your child's personal identification that you have provided to CCIR will always remain protected.

At any time, you reserve the right to withdraw your information from the CCIR registry. Simply contact the CCIR Curator, and your profile will be removed.

As a parent/guardian, how deeply should I involve my child in the registration process?

We believe that it is important for all the people participating in this registry to be as informed as possible. Therefore, if you are a parent or legal guardian of a child under the age of 18, but feel that the child is old enough to understand the idea of the registry, we recommend that you talk with your child and obtain his cooperation to participate in this registry. We recommend that any individual over the age of 18 register for himself, unless the parent or guardian maintains legal guardianship.

Terms and Conditions

The use of the registry website and the services associated with the website is governed by the following terms and conditions and a privacy policy both of which you must read before using the website. Please click for complete Terms and Conditions guidelines.

Privacy Policy

This Privacy Policy applies to your use of the Cystinosis Research International Registry (CCIR), all its sub-domains and all associated services including, but not limited to, e-mail received from the CCIR, any of our computer systems, databases or networks connected to the CCIR and all its sub-domains and content embedded on other websites (collectively, the "Website").

We are committed to protecting the privacy and security of your visits to the Website. This is our online Privacy Policy. If you have questions about this Privacy Policy, please let us know. If you do not agree with this Privacy Policy, please do not access or use the Website.

We reserve the right to modify this Privacy Policy at any time by posting such change here. We encourage you to refer back to this page and review this Privacy Policy often for the latest information and the effective date of any modifications. If we decide to change this Privacy Policy, we will post a new policy on the Website and change the revision number and effective date at the bottom. Changes to this Privacy Policy will not apply retroactively. Your continued use of the Website after any such modifications are made constitutes your acknowledgement of, and agreement with, the Privacy Policy, as modified.

Collection of Information

To register you as a user of, and to authorize you to access the Website, we collect some information that can be directly associated with you and/or any person you are creating a profile for. We call this "Personal Information" and it includes among other things, name and address, title and email address and the name of the company or research institution, if any with which you are affiliated. You may modify your Personal Information at any time after logging into the Website by accessing your user profile from the User Menu.

Opting Out

By registering as a user of the Website, you have granted us permission to use your Personal Information to send you emails ("opt-in"). If you have received an email from us, our records indicate that you are a registered user of the Website. Because we respect your time and attention, we make every effort to control the frequency of our emails.

You may revoke the permission you have given us to use your Personal Information to send you emails ("opt-out") by following the opt-out links at the end of any email we send you.

If you believe you have received unwanted, unsolicited email from us sent via the Website or purporting to be sent via the Website, please forward a copy of that email to the service provider.

Privacy and Sharing of Your Personal Information

It is our general policy not to make Personal Information available to anyone other than the CCIR Curator and designated members of our Operations Team. We will never share, sell or rent Personal Information with anyone without your advance permission or unless ordered by a court of law.

Personal Information will only be made available to the CCIR Curator and designated members of our Operations Team managing this information for purposes of contacting you or sending you emails based on your request for information.

Security

We maintain a variety of physical, electronic and procedural safeguards to protect your Personal Information. As mentioned above, it is our general policy to restrict access to Personal Information to our employees.

The Website may have links to other, outside websites that we do not control. You should know that we have no control over the content, privacy policies or security of any of these websites you elect to visit or interact with. Furthermore, we are not responsible for the content, privacy policies or security of any of these websites you elect to visit or interact with and you should check those policies on such websites.

Browser Information Collected on the Website.

We log IP addresses, which are the locations of computers or networks on the Internet, and analyze them in order to improve the utility of the Website. We also collect aggregate numbers of page hits in order to track the popularity of certain pages and improve the utility of the Website. We do not gather, request, record, require, collect or track any users' Personal Information through these processes.

We use cookies on the Website. A "cookie" is a tiny text file that we store on your computer to customize your experience and support some necessary functions. We also use cookies to better understand how users use the Website. Our cookies contain no Personal Information and are neither shared nor revealed to other websites. We do not look for or at other websites' cookies on your computer.

You also have choices with respect to cookies. By modifying your browser preferences, you can, among other options, accept all cookies, be notified when a cookie is set, or reject all cookies (for more information on how to block or filter cookies, see http://www.cookiecentral.com/faq). However, if you reject some or all cookies, your experience at the Website may not be complete.

Use of Web Beacons

When we send emails to users of the Website, we may include a web beacon to allow us to determine the number of users who open our emails. When you click on a link in an email we have sent to you, we may record this individual response to allow us to customize our offerings to you. Web beacons collect only limited information, such as a cookie identifier, time and date of a page being viewed, and a description of the page on which the Web Beacon resides (the URL).

Web Beacons can be refused when delivered via email. If you do not wish to receive Web Beacons via email, you will need to disable HTML images or refuse HTML (select Text only) emails via your email software.

Who to Contact

If you have any questions about the registration process or about participation in the registry, please contact the CCIR Curator at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .This e-mail address is being protected from spambots. You need JavaScript enabled to view it.

To inquire about your rights as a participant in this registry, or to report problems that result from your participation in the registry, you may contact the University of California, San Diego Human Research Protections Program

University of California, San Diego
Human Research Protections Program
9500 Gilman Drive, Mail Code 0052
La Jolla, California, 92093-0052
Office: (858) 455-5050
Registration Process

The registration process consists of two steps:

  • Creation of your account
  • Logging into the registry and completing your profile questionnaire

Once registered, you will need to login to create a profile for each person affected by cystinosis for whom you are legally authorized to provide information. Please note, if you are registering for multiple persons, you may use the same login and password to create multiple profiles, click on Add a Family Member. Each person must have a separate profile. Please encourage all members in your family who are affected by cystinosis to complete a profile. To begin the registration process, please complete the information below, review the explanation and purpose of the Cure Cystinosis International Registry, and click the Register button at the bottom of the page. This profile can be revised and updated at any time. You do not have to complete the profile(s) at one time. To make sure that all information is saved, please click NEXT on the bottom of each page until you reach the end of the survey, Registration Complete! Once you arrive at the last page your information is saved. Make sure to log out of the Cure Cystinosis International Registry each time. Individual profiles can be added at any time.

Thank you for taking the time to complete you or your child’s profile.  You have directly assisted the cystinosis community in its effort to find improved treatments and a cure for cystinosis?If you have any questions, please contact the CCIR Curator at This e-mail address is being protected from spambots. You need JavaScript enabled to view it . This e-mail address is being protected from spambots. You need JavaScript enabled to view it.