EYEris Aniridia Patient Registry


EYEris Aniridia Patient Registry Logo Aniridia North America

Empowering You for Enhanced Research, Information, and Support

What is the EYEris Aniridia Patient Registry?

The Registry is a collection of information from individuals diagnosed with Aniridia. It is designed to collect data to help researchers understand the broad range of both vision and non-vision related conditions associated with aniridia, and to potentially develop effective treatments for these conditions. Participation is free and involves completing an online questionnaire.

Each participant is assigned a Global Unique Identifier that enables de-identification of the data when shared with approved researchers to protect the patient’s privacy. This means that your name and other identifying information will not be passed on.
The de-identified data will be shared only with researchers approved by Sanford’s Scientific Advisory Board (SAB).
The registry is compliant with the European Union General Data Protection Regulation (GDPR).
The participant owns his/her personal data and can withdraw the data from the registry at any time.
There is no cost to the participants.
Providing your consent to ANA to have access to the data you provide will allow us to better understand aniridia, help us understand where to drive our research initiatives, and let us know how patients need more support.

Enrollment Instructions – Let’s Get Started!

If you would like to enroll in and complete the EYEris Aniridia Patient Registry online, you may do so by following the instructions below. The registry works best with updated versions of Google Chrome, Mozilla Firefox or Microsoft Edge and may not work as well with a phone or tablet. 

Step 1 – Set up a CoRDS Profile (5 min)

  • Activation Form – Complete the CoRDS Activation Form.
    Under “Rare Disease Diagnosis”, select either “Aniridia (Familial)” or “Aniridia (Sporadic)”.
    ***Please note: If the participant has WAGR Syndrome, select one of the WAGR Syndrome options. This will send you to the WAGR Syndrome registry instead of the EYEris Registry.***
  • Login Setup – The system will send you an email.
    Click the link on the email to create a password and set up a security question.
    Once completed, click the “Login” button to begin the questionnaire.

Step 2 – Complete the CoRDS Consent and Standard Questions (20 min)

  • Complete the CoRDS consent form.
  • Begin the questionnaire. The first 11 sets of questions are standardized and required by CoRDS.

Step 3 – Complete the EYEris Questions (20-45 min)

  • The EYEris-specific questions begin on page 12. The sections are listed in alphabetical order.
  • Click “Next” to go on to the next page, or “Previous” to change answers on a previous page.
  • Click “Finish” on the final page to submit the questionnaire.

Remember, you can always login to update your answers at any time. You should plan to update your questionnaire at least every year and after any significant changes to health.

THANK YOU for making an important contribution to aniridia research!

Help Spread the Word!

With rare disease registries, every single participant is important!

You are never required to disclose to anybody that you participated in the EYEris registry. However, if you wish to encourage others to participate like you did, you may print this image and post on your favorite social media channels.

Please use the hashtags #EYErisAniridiaRegistry and #WeCanDoItTogether in your social media posts.

Thank you for spreading the word and for participating in aniridia research. Together we can build a strong patient and research community!

Certificate that says "Proud to be a research participant!" with the EYEris Patient Registry Logo
Logo - Outline of an eye, with ANA in the middle and Aniridia North America underneath

Aniridia North America
106 W. Calendar Ave
Suite 122
LaGrange, IL 60525

Aniridia North America is registered as a 501(c)(3) non-profit organization in the United States.

EIN: 86-2917141

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