EYEris Aniridia patient Registry

Click here to sign up for the first time.

Please update your registry information once per year.

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.

Registry Highlights

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!

Frequently Asked Questions

Who can join the EYEris Aniridia Patient Registry?

Anyone diagnosed with aniridia, regardless of age or country, can enroll in the registry.

***Note: Patients with a diagnosis of WAGR syndrome should only enroll in the WAGR syndrome Patient Registry***

How do I enroll?

Enrolling is easy! Visit https://cords.sanfordresearch.org/activation-form and follow the steps to create an account. If you need assistance, you can email the registry team at cords@sanfordhealth.org or call 1-877-658-9192.

What does “EYEris” stand for?

EYEris stands for “Empowering You for Enhanced Research, Information, and Support.” The EYEris Aniridia Registry empowers the patient community to help advance research, improve the information available, and thereby enhance the support available.

Why should I enroll?

The EYEris Aniridia Patient Registry is an invaluable type of research called a “Natural History study.” It captures data on real-world patient experiences over time. By participating in this Registry, you contribute directly to this research, and help researchers and doctors understand this disorder from birth through adulthood.

Can I enroll if I have participated in other Aniridia Registries?

Yes. The EYEris Aniridia Patient Registry is free and open to any patient with aniridia. It is also free and open to any researcher with Institutional Review Board (IRB) approval.

What makes the EYEris Aniridia Patient Registry special?

ANA is excited to launch the EYEris Aniridia Patient Registry. The following things make it special:

*Worldwide access*
Any patient, worldwide, is welcome to enroll. Any researcher, worldwide, is welcome to access the de-identified information with the appropriate approvals.

*Free*
There is no cost to participants to enroll. There is no cost to researchers to access the registry.

*Independent*
The registry is administered by CoRDS, which is a centralized international patient registry for all rare diseases. No affiliation with any other organization is required to participate in the registry.

*Standardized Questions*
Whenever possible, questions have been pulled from a standardized bank of questions. This allows for easy comparison with other rare diseases, including WAGR syndrome.

*Comprehensive*
The registry involves questions related to all body systems potentially affected and likely not affected in aniridia. This will help researchers determine whether there are links to non-ocular conditions in aniridia.

*Strict privacy guidelines*
The registry is compliant with the European GDPR, which is the strongest privacy and security law in the world.

Can I enroll my child?

Children under age 18 may be enrolled by a parent or legal guardian.
A legally authorized representative may enroll an adult if they are not able to do it themselves.

What information do I need to provide?

You’ll be asked to share details about your diagnosis, treatments, and procedures. You may also provide information about your family history and any genetic testing you’ve undergone related to aniridia. You are not required to answer every question.

What if I am not sure how to answer a question?

You may answer “unsure” to any question, OR call 1-877-658-9192.

How does the registry protect my privacy?

Your privacy is very important. The registry follows strict security measures to keep your information confidential. Only authorized researchers will have access to de-identified data, meaning name and personal details are removed to protect identity. The registry also meets all requirements of the General Data Protection Regulation (GDPR).

How will my information be used?

The information in the Registry may be used in multiple ways:
* Researchers can apply for access to the de-identified data. This information can help them work on gaining a better understanding of a condition, or to identify new or better treatments.
* Researchers can request that participants be contacted about clinical trials or studies. Participants must consent to be contacted.
* ANA can analyze group data to create educational materials for the patient community. Participants must consent for ANA to have access to their de-identified data.

Who owns the data?

Participants are the primary owners of the data because they control how the data is ultimately used. Participants may withdraw their data from the registry at any time. CoRDS simply stores the information as required by the Sanford Research Institutional Review Board (IRB). ANA and CoRDS will never sell, rent, or lease personal information.

What is Coordination of Rare Diseases at Sanford (CoRDS)?

CoRDS is a centralized international patient registry platform for all rare diseases. The ANA EYEris Aniridia Patient Registry is one of more than 100 patient registries housed on this platform at Sanford Research, a US-based nonprofit research institution: https://research.sanfordhealth.org/rare-disease-registry

Is enrolling in the registry voluntary?

Yes, enrolling in the registry is entirely voluntary. You can choose to join and withdraw at any time. Your decision to participate does not affect your medical care or relationship with ANA in any way.

Will I receive updates about the registry’s progress?

Yes, you’ll receive periodic updates about the registry’s progress, including any research findings or opportunities to participate in studies.

Can data be collected worldwide?

Yes, the registry can be accessed all over the world with the link provided on our website. International participation is highly encouraged.

Are translation options available?

If you need translation assistance, please ask a friend, family member or coworker for help.

When should I update my registry information?

Updates can be done any time and should only take 10-15 minutes. Updates should be done at least every year, after any significant change in the participant’s health, and immediately after their 18th birthday. CoRDS will send an automated reminder to update the registry once per year.

What if I forgot my password or am having technical issues?

Contact cords@sanfordhealth.org OR Call 1- 877-658-9192.

What if I have more questions?

You can email the registry team at cords@sanfordhealth.org or call 1-877-658-9192. You can also email ANA at ContactUs@aniridiana.org with “Registry” in the subject line.

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!